NATIONAL RESOURCES FOR SPECIFIC DISABILITIES.This directory includes national groups and organizations that can serve as resources for parents and professionals seeking information and support regarding specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Federally-Funded Information Resources (1) The data and information assets of an organization, department or unit. See data administration. (2) Another name for the Information Systems (IS) or Information Technology (IT) department. See IT. , Parent to Parent Programs, or certain National Information and Advocacy The act of Pleading or arguing a case or a position; forceful persuasion. Resources (see Table of Contents for page numbers). In addition, Matching Resources, at the end of this directory, may also be useful. CROSS-REFERENCING Categories have been cross-referenced where appropriate. Many conditions are known by more than one name. Readers are directed to "See" other relevant category names where resources are also listed. Under CHROMOSOME 4P-, for example, readers are referred to WOLF-HIRSCHHORN SYNDROME Wolf-Hirschhorn syndrome, also known as deletion 4p and 4p- syndrome was first described in 1961 by U. Wolf and K. Hirschhorn and their co-workers. It is a characteristic phenotype resulting from a partial deletion of chromosomal material of the short arm of . Some specific disabilities are not covered not covered Health care adjective Referring to a procedure, test or other health service to which a policy holder or insurance beneficiary is not entitled under the terms of the policy or payment system–eg, Medicare. Cf Covered. by a specific national organization. These conditions may be cross-referenced to a broader category that includes organizations that can provide helpful resources. For example, the metabolic met·a·bol·ic adj. Of, relating to, or resulting from metabolism. Metabolic Refers to the chemical processes of an organ or organism. condition ARGINASE DEFICIENCY arginase deficiency Metabolic disease Congenital deficiency of arginase, which results in hyperargininemia and episodic hyperammonemia, leading to mental retardation and spasticity is cross-referenced to UREA CYCLE DISORDERS urea cycle disorder Any disorder in which the body is unable to excrete waste nitrogen–ammonia–resulting in mental and behavioral dysfunction, coma, death . In some cases, the reader may be directed to a similar (but not identical) condition, when groups for that condition have indicated the ability and willingness to provide appropriate information and support. For example, 45,X SYNDROME syndrome /syn·drome/ (sin´drom) a set of symptoms occurring together; the sum of signs of any morbid state; a symptom complex. See also entries under disease. is cross-referenced to TURNER'S SYNDROME Tur·ner's syndrome n. A congenital condition of females associated with a defect or an absence of an X-chromosome, characterized by short stature, webbed neck, outward-turning elbows, shield-shaped chest, sexual underdevelopment, and amenorrhea. and HYPOPIGMENTATION hy·po·pig·men·ta·tion n. Diminished pigmentation, especially of the skin. Hypopigmentation A skin condition that occurs when the body has too little melanin, or pigment. . In cases where resources are available for both a general category of disability (for example, VISUAL IMPAIRMENT Visual Impairment Definition Total blindness is the inability to tell light from dark, or the total inability to see. Visual impairment or low vision is a severe reduction in vision that cannot be corrected with standard glasses or contact lenses and ), as well as specific conditions within that general category (for example, ALBINISM albinism Absence of the pigment melanin in the eyes, skin, hair, scales, or feathers. It arises from a genetic defect and occurs in humans and other vertebrates. Because they lack the pigments that normally provide protective coloration and screen against the sun's ; GLAUCOMA glaucoma (glôkō`mə), ocular disorder characterized by pressure within the eyeball caused by an excessive amount of aqueous humor (the fluid substance filling the eyeball). ; MACULAR macular adjective Related to 1. A macule 2. The macula DISEASES; RETINITIS PIGMENTOSA Retinitis Pigmentosa Definition Retinitis pigmentosa (RP) refers to a group of inherited disorders that slowly lead to blindness due to abnormalities of the photoreceptors (primarily the rods) in the retina. ; RETINOBLASTOMA Retinoblastoma Definition Retinoblastoma is a malignant tumor of the retina that occurs predominantly in young children. Description The eye has three layers, the sclera, the choroid, and the retina. ; SEPTO-OPTIC DYSPLASIA sep·to-op·tic dysplasia n. A congenital hypoplasia of the optic nerve resulting from the defective development of the retinal ganglia cells and their axons. ; and USHER SYNDROME Usher syndrome An AR condition characterized by retinitis pigmentosa–RP and sensorineural deafness ), cross-referencing goes in two directions. Under VISUAL IMPAIRMENTS, for example, readers are informed of the types of visual impairments for which specific resources exist; and under each specific type of visual impairment, readers are referred back to the more general category. The only exception to this type of cross-referencing is the general category MENTAL RETARDATION mental retardation, below average level of intellectual functioning, usually defined by an IQ of below 70 to 75, combined with limitations in the skills necessary for daily living. , which is not used as a cross-referencing term. In cases where one specific condition usually includes other conditions, but those other conditions do not necessarily include the first condition, cross-referencing goes in one direction only. For example under LAURENCE-MOON-BARDET-BIEDL SYNDROME Lau·rence-Moon-Bardet-Biedl syndrome n. A combination of the Laurence-Moon syndrome and the Bardet-Biedl syndrome. (LMBBS), readers are directed to "See also" KIDNEY DISORDERS A
Cross-referencing assistance came from the organizations listed in this directory, from the National Organization for Rare Disorders (NORD Nord (nôr), department (1990 pop. 2,533,000), N France, bordering on the North Sea and Belgium. Lille is the capital. ) and their Resource Guide (fourth ed., 2000, available for $53.95 including S&H through the EXCEPTIONAL PARENT Library [800] 535-1910; Item Number NO418DI), and from the Physician's Guide to Rare Diseases (second ed., 1995, edited ed·it tr.v. ed·it·ed, ed·it·ing, ed·its 1. a. To prepare (written material) for publication or presentation, as by correcting, revising, or adapting. b. by Jess jesse, jess a leather strap placed around each shank of a hawk used for hunting, for the attachment of a leash. G. Thoene, MD, also available for $45.00 including S&H from the EP Library as Item Number DP1311OD). USING THIS DIRECTORY A description of services provided by individual groups follows each listing in this directory. Numbers correspond to items listed in the Key to Services, which appears throughout this directory at the bottom of the page. When available e-mail addresses See Internet address. e-mail address - electronic mail address and World Wide Web sites have been included. E-mail addresses are indicated by the symbol, ??. Web sites are listed with the standard http:// before each. (Unless otherwise indicated, all telephone numbers are for voice only.) 1-[Beta]-HYDROXYLASE DEFICIENCY See: Adrenal Disorders 17-20-DESMOLASE DEFICIENCY See: Adrenal Disorders 17-ALPHA-HYDROXYLASE DEFICIENCY See: Adrenal Disorders 17-HYDROXYLASE DEFICIENCY See: Adrenal Disorders 21-HYDROXYLASE DEFICIENCY See: Adrenal Disorders 3-[Beta]-HYDROXYSTEROID DEHYDROGENASE DEFICIENCY See: Adrenal Disorders 45, X SYNDROME See: Turner's Syndrome; Hypopigmentation A-BETA-LIPOPROTEINEMIA See: Tay-Sachs Disease ABDOMINAL MIGRAINE See: Cyclic Vomiting Syndrome ACHONDROPLASlA See: Growth Disorders ACID MALTASE DEFICIENCY See also: Glycogen Storage Diseases; Muscular Dystrophy (AMDA) Acid Maltase Deficiency Association PO Box 700248 San Antonio, TX 78270-0248 (210) 494-6144 (210) 490-7161 (fax) ??tianrama@aol.com http://www.amda-pompe.org ACIDEMIA, ISOVALERIC (IVA) See: Acidemia, Organic ACIDEMIA, METHYLMALONIC See: Acidemia, Organic ACIDEMIA, ORGANIC See also: Fatty Oxidation Disorder; Maple Syrup Urine Disease; Metabolic Disorders Organic Acidemia Association 13210 35th Ave. N. Plymouth, MN 55441 (763) 559-1797 (763) 694-0017 (fax) ??oaanews@aol.com http://www.oaanews.org 1,2,3,7,8 ACIDEMIA, PROPIONIC See: Acidemia, Organic ACOUSTIC NEUROMA See also: Balance Disorders & Dizziness; Brain Tumors; Hearing Impairments; Neurofibromatosis; Neurofibromatosis, Type 2; Vestibular Disorders Acoustic Neuroma Association 600 Peachtree Pkwy., Ste. 108 Cumming, GA 30041 (404) 237-8023 (404) 237-2704 (fax) ??anausa@aol.com http://www.anausa.org 1,2,4,6,8 Acoustic Neuroma Association of Canada PO Box 369 Edmonton, AB CAN T5J 2J6 (800) 561-2622 (voice/TDD, Canada only) (403) 428-3384 (voice/TDD) ??anac@compusmart.ab.ca http://www.anac.ca 1,2,3,5,6; French materials ACQUIRED IMMUNE DEFICIENCY SYNDROME See: AIDS ACROCEPHALOSYNDACTYLY, TYPE I See: Apert Syndrome ACROFACIAL DYSOSTOSlS, NAGER TYPE See: Nager & Miller Syndromes ACROMEGALY See: Multiple Endocrine Neoplasia I; Pituitary Tumors ACTH DEFICIENCY See: Adrenal Disorders ACYL-COA DEHYDROGENASE DEFICIENCY, MEDIUM-CHAIN See: Fatty Oxidation Disorder ADDISON DISEASE See: Adrenal Disorders ADIPOGENITAL-RETINITIS PIGMENTOSA-POLYDACTYLY SYNDROME See: Laurence-Moon-Bardet-Biedl Syndrome ADRENAL CORTEX MALE PSEUDOHERMAPHRODITISM See: Adrenal Disorders ADRENAL DISORDERS National Adrenal Diseases Foundation 505 Northern Blvd. Great Neck, NY 11021 (516) 487-4992 ??nadf@aol.com http://medhlp.netusa.net/www/n adf.htm 1,2,3,4,5 ADRENOCORTICOTROPIC HORMONE DEFICIENCY See: Adrenal Disorders; Pituitary Tumors ADRENOGENITAL SYNDROME See: Adrenal Disorders ADRENOLEUKODYSTROPHY See: Leukodystrophy; Tay-Sachs Disease ADRENOLEUKODYSTROPHY, NEONATAL See: Leukodystrophy; Tay-Sachs Disease AGENESIS OF COMMISSURA MAGNA CEREBRI See: Agenesis of the Corpus Callosum AGENESIS OF THE CORPUS CALLOSUM ACC Network 5749 Merrill Hall, Rm. 118 University of Maine Orono, ME 04469-5749 (207) 581-3119 (207) 581-3120 (fax) ??um-acc@maine.edu 3 AGYRIA See: Lissencephaly AICARDI SYNDROME See also: Agenesis of the Corpus Callosum; Epilepsy; Visual Impairments Aicardi Syndrome Awareness and Support Group/Network 29 Delavan Ave. Toronto, ON CAN M5P 1T2 (416) 481-4095 ??asasn@sympatico.ca http://www3.sympatico.ca/asasn 2,3,4,7,9 Aicardi Syndrome Newsletter 1510 PoloFields Ct. Lexington, KY 40245 (502) 244-9152 (937) 368-2137 (fax) ??AICNews@aol.com http://www.Aicardi.com 1,2,3,6,7,8 AIDS CDC National STD and AIDS Hotlines (800) 227-8922 (800) 342-2437 (800) 344-7432 (Spanish) (800) 243-7889 (TDD) ??hivnet@ashastd.org http://www.ashastd.org http://www.iwannaknow.org 2,4 Spanish materials National Pediatric & Family HIV Resource Center 30 Bergen St.-ADMC-4 Newark, NJ 07107 (800) 362-0071 (973) 972-0410 (973) 972-0399 (fax) ??ortegaes@umdnj.eou http://www.pedhivaid.org 1,2,4,7; Spanish/Creole materials ALAGILLE SYNDROME See also: Heart Disorders; Liver Disorders Alagille Syndrome Alliance 10630 SW Garden Park Pl. Tigard, OR 97223 (503) 639-6217 ??alagille@teleport.com http://www.alagille.org 1,2,3,4,9 ALANINURIA See: Lactic Acidosis; Acidemia, Organic ALBINISM & HYPOPIGMENTATION See also: Visual Impairments NOAH (National Organization for Albinism and Hypopigmentation) PO Box 959 E. Hampstead, NH 03826-0959 (800) 473-2310 (603) 887-2310 (phone/fax) ??webmaster@albinism.org http://www.albinism.org/ 1,2,3,4,5,6,8,9; Spanish materials ALBRIGHT SYNDROME See: Growth Disorders ALGONEURODYSTROPHY See: Reflex Sympathetic Dystrophy Syndrome ALLERGY See: Asthma & Allergy; Food Allergy; Latex Allergy ALLERGY, FOOD See: Food Allergy ALLERGY, LATEX See: Latex Allergy ALOPECIA AREATA NATIONAL National Alopecia Areata Foundation 710 C St., Ste. 11 San Rafael, CA 94901 (415) 456-4644 (415) 456-4274 (fax) ??info@naaf.org http://www.naaf.org 1,2,3,4,5,6,7,8,9; Spanish materials ALOPECIA UNIVERSALA-ONYCHODYSTROPHY-TOTAL VITILIGO See: Ectodermal Dysplasias; Vitiligo ALOPECIA-ANOSMIA-DEAFNESS-HYPOGONADISM See: Ectodermal Dysplasias ALOPECIA-ONYCHODYSPLASlA-HYPOHIDROSIS See: Ectodermal Dysplasias ALPHA-1-ANTITRYPSIN (AAT) DEFICIENCY See also: Liver Disorders; Lung Diseases Alpha-1 Antirypsis Deficiency National Association 8120 Penn Ave. South, Ste. 549 Minneapolis, MN 55431 (612) 703-9979 (612) 703-9977 (fax) ??aina@alpha1.org http://www.alpha1.org 1,2,3,4,5,6,7,9 ALPHA-GALACTOSIDASE DEFICIENCY See: Fabry Disease ALPORT SYNDROME See: Hearing Impairments; Kidney Diseases, Hereditary; Vision Impairments ALSTROM SYNDROME See: Diabetes Mellitus; Hearing Impairments; Kidney Disorders; Retinitis Pigmentosa; Visual Impairments ALTERNATING HEMIPLEGIA See: Hemiplegia, Alternating AMELOCEREBROHYPHOHIDRO TIC SYNDROME See: Ectodermal Dysplasias AMELOONYCHOHY-PHOHIDROTIC DYSPLASIA See: Ectodermal Dysplasias AMNIOTIC BANDS See: Craniofacial Disorders AMPUTATION See also: Limb Disorders American Amputee Foundation PO Box 250218 Little Rock, AR 72225 (501) 666-2523 (501) 666-8367 (fax) 1,2,4,5,9 Amputee Coalition of America 900 E. Hill Ave., Ste. 285 Knoxville, TN 37915-2568 (888) AMP-KNOW (267-5669) (865) 524-8772 (865) 525-7917 (fax) ??editor@amputee-coalition.org http://www.amputee-coalition.org 1, (newsletter for support grp. leaders) 2,3,5, (nat'l support groups) 6,7; Spanish materials National Amputation Foundation 38-40 Church St. Malvern, NY 11565 (516) 887-3600 (516) 887-3667 (fax) ??amps76@aol.com http://www.nationalamputation. org 1,2,3,4,7,9 AMSTERAM DWARF SYNDROME OF DE LANGE See: Cornelia de Lange Syndrome AMYLO-1, 6-GLUCOSIDASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy AMYLOPECTINOSIS See: Glycogen Storage Diseases AMYOPLASIA, CONGENITA See: Arthrogryposis Multiplex Congenita ANAL ATRESIA See: Anorectal Malformations ANAL STENOSIS See: Anorectal Malformations ANDERSEN DISEASE See: Glycogen Storage Diseases ANDERSON-FABRY DISEASE See: Fabry Disease ANDERSON-WARBURG SYNDROME See: Norrie Disease ANEMIA, APLASTIC See: Anemia, Fanconi; Bone Marrow Transplant Aplastic Anemia Association of Canada 22 Aikenhead Rd. Etobicoke, ON CAN M9R 2Z3 (416) 235-0468 (519) 235-1756 (fax) http://www.aplastic.ualberta.ca 1,2,4,7,8,9 Aplastic Anemia MDS International Foundation, Inc. PO Box 613 Annapolis, MD 21404-0613 (800) 747-2820 (410) 867-0240 (fax) ??aamdsuffice@aol.com http://www.aamds.org 1,2,3,5,6,8,9, French/German/ Japanese/Spanish materials ANEMIA, AREGENERATIVE See: Anemia, Aplastic ANEMIA, COOLEY See: Cooley Anemia ANEMIA, DIAMOND BLACKFAN See also: Anemia Aplastic, Anemia Fanconi, Autoimmune Disorders Diamond Blackfan Anemia Registry 1 Gustave Levy Pl. Box 1208 New York, NY 10029 (212) 241-6031 (212) 360-6921 (fax) ANEMIA, ERYTHROBLASTOTIC See: Cooley Anemia ANEMIA, FANCONI See also: Anemia, Aplastic; Heart Disorders; Kidney Disorders; Leukemia Fanconi Anemia Research Fund/Support Group (800) 828-4891 (family support only) (541) 687-4658 (541) 687-0548 (fax) ??info@fancani.org http://www.fanconi.org 1,2,3,4,5,5,7,8,9; Spanish/Portugese/French materials ANEMIA, HEMOLYTIC See: Cooley Anemia ANEMIA, HYPOPLASTIC See: Anemia, Aplastic ANEMIA, MEDITERRANEAN See: Cooley Anemia ANEMIA, REFRACTORY See: Anemia, Aplastic ANEMIA, TARGET CELL See: Cooley Anemia ANEMIA, TOXIC PARALYTIC See: Anemia, Aplastic ANGELMAN SYNDROME See also: Epilepsy Angelman Syndrome Foundation 414 Plaza Dr., Ste. 209 Westmont, IL 60559-5507 (800) 432-6435 (630) 655-0391 ??asf@adminsys.com http://www.chem.ucsd.edu/asf 1,2,3,4,5,6,7,8,9; Internet mail list-subscribe by sending e-mail to: listserv@ucsd.edu Canadian Angelman Syndrome Society PO Box 37 Priddis, AB CAN, T0L 1WO (403) 931-2415 (voice/fax) ??cass@cadvision.com http://www.rigel.phys.ualberta.ca /cass 1,2,3,5,6,9; French materials ANGIO-OSTEOHYPERTROPHY SYNDROME See: Klippel-Trenaunay Syndrome ANGIOKERATOMA CORPORIS DIFFUSUM See: Fabry Disease ANGIOMATOSlS RETINA See: Von Hippel-Lindau Syndrome ANIRIDIA See also: Visual Impairments, WAGR Syndrome The Canadian Foundation for Aniridia Research 3780 Verdun Ave., Ste. 2 Montreal, QUE CAN H4G 1K6 (514) 761-5998 ??cfar@generation.net http://www.aniridia.org ANKYLOSING SPONDYLITIS, JUVENILE See: Arthritis ANOPHTHALMIA See also: Visual Impairments International Children's Anophthalmia Network 5501 Old York Rd. Philadelphia, PA 19141 (800) 580-4226 (215) 456-2350 (fax) ??aemcgenetics.icdc.com http://www.ioi.com/ca 1,2,3,4,6,9 ANORECTAL MALFORMATIONS See also: Intestinal Pseudo-Obstruction Syndrome Pull-Thru Network 4 Woody Ln. Westport, CT 06880 (203) 221-7350 (203) 221-9212 (fax) ??pullthrunw@aol.com http://www.pullthrough.org 1,2,3,4,9 ANOREXIA NERVOSA Includes bulimia nervosa and binge-eating disorder American Anorexia Bulimia Association, Inc. http://www.aabainc.org 2,3,4,5 National Association of Anorexia Nervosa and Related Disorders PO Box 7 Highland Park, IL 60035 (847) 831-3438 (847) 433-4632 (fax) ??info@anad.org http://www.anad.org 2,3,4,5,6,7 APECED SYNDROME See: Ectodermal Dysplasia; Hypoparathyroidism APERT SYNDROME See also: Craniofacial Disorders Apert Syndrome Pen Pal Network PO Box 115 Providence, RI 02901 (401) 454-4849 2,3, APHASIA, ACQUIRED See also: Brain Injury/Stroke National Aphasia Association 156 Fifth Ave., Ste. 707 New York, NY 10010 (800) 922-4622 (212) 989-7777 (fax) ??naa@aphasia.org http://www.aphasia.org 1,2,3,4,5 APLASTIC ANEMIA See: Anemia, Aplastic APNEA, INFANTILE See: Apnea, Sleep APNEA, SLEEP American Sleep Apnea Association 1424 K St. NW Ste. 302 Washington, DC 20005 (202) 293-3656 ??asaa@sleepapnea.org http://sleepapnea.or 1,2,4 APRAXIA See also: Learning Disabilities The Childhood Apraxia of Speech Association 123 Eisele Rd. Cheswick, PA 15024 (412) 767-6589 (412) 767-0534 (fax) ??helpdesk@apraxia.org http://www.apraxia.org 1,2,4,7 AQUEDUCTAL STENOSIS See: Hydrocephalus ARACHNODACTYLY See: Marfan Syndrome AREGENERATIVE ANEMIA See: Anemia, Aplastic ARGINASE DEFICIENCY See: Urea Cycle Disorders ARGININOSUCCINASE DEFICIENCY See: Urea Cycle Disorders ARGININOSUCCINIC ACID SYNTHETASE DEFICIENCY See: Urea Cycle Disorders ARGININOSUCCINIC ACIDURIA See: Urea Cycle Disorders ARNOLD CHIARI MALFORMATION See also: Syringomyelia National Institute of Neurological Disorders (NIH) 31 Center Dr., MSC 2540 Bldg. 31, Rm. 8A16 (800) 352-9424 (301) 496-5751 (301) 402-2186 (fax) http://www.ninds.nih.gov/ ARTERIOHEPATIC DYSPLASIA See: Alagille Syndrome ARTERIOVENOUS MALFORMATIONS (AVMS) See: Epilepsy; Stroke; Vascular Malformations ARTHRO-OPTHALMOPATHY See: Stickler Syndrome ARTHRITIS American Juvenile Arthritis Organization 1330 W. Peachtree St. Atlanta, GA 30309 (800) 283-7800 (404) 872-7100 (404) 872-9559 (fax) ??spitts@arthritis.org http://www.arthritis.org 1,2,3,4,5,6,7,8; Spanish materials Arthritis Society #1700, 393 University Ave. Toronto, ON CAN M5G 1E6 (800) 321-1433(Canada only) (416) 979-7228 (416) 979-8366 (fax) ??nkent@arthritis.ca http://www.arthritis.ca 2,5,7,8; French materials National Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse (NAMSIC) Information Specialist 1 AMS Circle Bethesda, MD 20892-3675 (301) 881-2731 (301) 563-2966 (TDD) (301) 718-6366 (fax) http://www/nih.gov/niams/ ARTHROCHALASIS MULTIPLEX CONGENITA See: Ehlers-Danlos Syndrome ARTHROGRYPOSIS MULTIPLEX CONGENITA See also: Growth Disorders; Muscular Dystrophy AVENUES: A National Support Group for Arthrogryposis Multiplex Congenita PO Box 5192 Sonora, CA 95370 (209) 928-3688 ??avenues@sonnet.com http://www.sonnet.com/avenues 1,2,3 ASCENDING PARALYSIS See: Guillain-Barre Syndrome ASPERGER SYNDROME See: Autism ASTHMA See: Asthma & Allergy ASTHMA & ALLERGY See also: Food Allergy; Latex Allergy; Lung Diseases Allergy and Asthma Network Mothers of Asthmatics, Inc. 2751 Prosperity Ave., Ste. 150 Fairfax, VA 22031-4397 (800) 878-4403 (703) 641-9595 (703) 573-7794 (fax) ??aanma@aol.com http://www.aanma.org 1,2,7 Asthma and Allergy Foundation of America 1233 20th Street, NW, Ste. 402 Washington, DC 20036 (800) 727-8462 (202) 466-7643 (202) 466-8940 (fax) ??info@aafa.org http://www.aafa.org 1,2,3,4,5,6,7,8; Spanish materials Asthma Society of Canada 130 Bridgeland Ave., Ste. 425 Toronto, ON CAN M6A 1Z4 (416) 787-4050 (416) 787-5807 (fax) ??info@asthma.ca http://www.asthma.ca 1,2,8; patient education ATAXlA See also: Ataxia Telangiectasia; Charcot-Marie-Tooth Disease; Friedreich Ataxia; Von Hippel-Lindau Syndrome National Ataxia Foundation 2600 Fernbrook Ln., Ste. 119 Minneapolis, MN 55447-4752 (763) 553-0020 (763) 553-0167 (fax) ??naf@mr.net http://www.ataxia.org 1,2,3,4,5,6,8 ATAXIA, FAMILIAL See: Ataxia; Friedreich Ataxia ATAXIA, FRIEDREICH See: Ataxia; Friedreich Ataxia ATAXIA, SPINOCEREBELLAR See: Ataxia; Friedreich Ataxia ATAXIA, TELANGIECTASIA See also: Ataxia; Autoimmune Disorders; Cancer; Immune Disorders; Leukemia Ataxia Telangiectasia Children's Project 668 South Military Trail Deerfield, FL 33442 (800) 543-5728 (954) 481-6611 (954) 725-1153 (fax) ??info@atcp.org http://www.atcp.org 1,2,3,6,7,8,9 Spanish materials ATAXIA WITH LACTIC ACIDOSIS II See: Ataxia; Lactic Acidosis; Mitochondrial Disorders ATRESIA See: Microtia ATRIAL SEPTAL DEFECTS See: Heart Disorders ATROPHIA BULBORUM HEREDITARIA See: Norrie Disease ATTENTION DEFICIT DISORDER The ADHD Challenge PO Box 488 West Peabody, MA 01985-7277 (800) 233-2322 1,2,4, Learning Disabilities AD-IN: Attention Deficit Information Network 475 Hillside Ave. Needham, MA 02494 (781) 455-9895 (781) 444-5466 (fax) ??adin@gis.net http://www/.addinfonetwork.org 2,3,4,5,6,8 CHADD-Canada, Inc.-Children and Adults with Attention Deficit Disorder 1376 Bank St. Ottawa ON, CAN K1H 1B3 (613) 731-1209 (613) 257-1563 (fax) ??chaddcanad@hotmail.com http://www.chadd.org http://www.members.tripod.com/ ~chaddcanada/index.html 1,2,3,5,5,9; Spanish materials CHADD: Children and Adults with Attention Deficit Disorders 8181 Professional Pl., Ste. 201 Landover, MD 20785 (800) 233-4050 (301) 306-7070 (301) 306-7090 (fax) ??national@chadd.org http://www.chadd.org 1,2,3,5,6,9; Spanish materials National ADD Association 1788 2nd St., Ste. 200 Highland Pk, IL 60035 (847) 432-ADDA (2332) http://www.add.org ??mail@add.org 1,2,4,6 AURICULO-OCULO-VERTEBRAL SYNDROME See: Goldenhar Syndrome AUTISM See also: Autism and Sensory Impairments; Language Disorders Asperger Syndrome Coalition of the United States PO Box 49267 Jacksonville, FL 32240-9267 (904) 745-6741 ??info@asc-us.org http://www.asperger.org 2,3, Autism Independent UK 199/201 Blanford Ave. Kettering, Northants NN16 9AT United Kingdom 01536 523274 (phone/fax) ??autism@rmplc.co.uk http://www.autismuk.com Autism National Committee PO Box 6175 N. Plymouth, MA 02362-6175 (610) 649-9139 (610) 649-0974 (fax) http://www.autcom.org Autism Research Institute 4182 Adams Ave. San Diego, CA 92116 (619) 281-7165 (619) 563-6840 (fax) http://www.autism.com/autism 1,2,4,6,9 Autism Resources http://www.unc.edu/~cory/autism-info 2,3,4,7,9 Autism Society of America 7910 Woodmont Ave., Ste. 300 Bethesda, MD (800) 328-8476 (301) 657-0881 (301) 657-0869 (fax) http://www.autism-society.org/ 1,2,4,5,6,7,8; Chinese/French/Spanish/ Vietnamese materials Autism Society of Canada 129 Yorkville Ave., #202 Toronto, ON CAN M5R 1C4 (416) 922-0302 (416) 922-1032 (fax) 1,2,4,7; French materials Center for Study of Autism PO Box 4538 Salem, OR 97302 (503) 363-9110 (voice/fax) ??sait@teleport.com http://www.autism.org/ 2,6 MAAP Services, Inc. PO Box 524 Crown Point, IN 46307 (219) 662-1311 (219) 662-0638 (fax) ??chart@netnitco.net http://ww2.netnitco.net/users/ch art/maap.htm 1,2,5,6 National Autism Hotline/Autism Services Center 605 Ninth St., Prichard Bldg. PO Box 507 Huntington, WV 25710-0507 (304) 525-8014 (304) 525-8026 (fax) 2,3,5,7; Spanish/Italian/French materials The New Jersey Center for Outreach and Services for the Autism Community Inc. (COSAC) 1450 Parkside Ave., Ste. 22 Ewing, NJ 08638 (800) 4-AUTISM (NJ only) (609) 883-8100 (609) 883-5509 (fax) ??information@njcosac.org http://www.njcosac.org 1,2,4 AUTISM AND SENSORY IMPAIRMENTS See also: Hearing Impairments; Visual Impairments The Autism Network for Hearing & Visually Impaired Persons c/o Dolores and Alan Barrel 7510 Oceanfront Ave. Virginia Beach, VA 23451 (757) 428-9036 (757) 428-0019 (fax) 3,4,7,9 CAN (Cure Autism Now) 5455 Witshire Blvd., Ste. 715 Los Angeles, CA 90036 (888) 8-AUTISM (288476) (323) 549-0500 (323) 549-0547 (fax) ??info@cureautismnow.org http://www.canfoundation.org Indiana Resource Center for Autism (IRCA) indiana Institute on Disability and Community 2853 E. 10th St. Bloomington, IN 47408-2696 (812) 855-6508 (812) 855-9396 (TDD) (812) 855-9630 (fax) ??prattc@indiana.edu http://www.isdd.indiana. edu/~irca 2,4,8 The National Alliance for Autism Research 414 Wall St. Research Park Princeton, NJ 08540 (888) 777-NAAR (5227) (609) 430-9160 (609) 430-9163 (fax) ??naar@naar.org http://www.naar.org 1,2,8 On-line Asperger's Syndrome information and Support (OASIS) ??bkirby@udel.edu http://www.udel.edu/bkirby/asp erger 2,3 TEACCH 310 Medical School Wing E University of North Carolina at Chapel Hill/CB #7180 Chapel Hill, NC 27599-7180 (919) 966-2174 (919) 966-4127 (fax) ??teacch@unc.edu http://www.unc.edu/depts/ teacch 2,4,5 Yale Program for Autism, Prader-Willi Syndrome, and Williams Syndrome Yale Child Study Center 230 S. Frontage Rd. PO Box 207900 New Haven, CT 06520-7900 (203) 785-7923 (203) 785-7611 (fax) ??devdis.clinic@yale.edu http://info.med.yale.edu/chldstdy.ws pws 2,9 AUTOIMMUNE DISORDERS See also: Immune Disorders; Vitiligo American Autoimmune Related Diseases Association 22100 Gratiot Ave, East Detroit, MI 48021 (800) 598-4668 (810) 776-3900 (810) 776-3903 (fax) ??aarda@aol.com http://www.aarda.org 1,2,4,5,6,7,,8 AUTOIMNIUNE MYOCARDITIS See: Autoimmune Disorders B12 METABOLISM; INBORN ERROR OF See: Cobalamin (B12) Deficiency BAISCH SYNDROME See: Ectodermal Dysplasias BALANCE DISORDERS & DIZZINESS See also: Vestibular Disorders EAR Foundation 1817 Patterson St. Nashville, TN 37203-2110 (800) 545-4327 (voice/TTY) (615) 329-7807 (615) 329-7935 (fax) ??ear@earfoundation.org http://www.earfoundation.org 1,2 BANNAYAN, RUVALCABA, RILEY-SMITH SYNDROME See: Sotos Syndrome BARDET-BIEDL SYNDROME See: Laurence-Moon-Bardet-Biedl Syndrome BATTEN DISEASE See also: Tay-Sachs Disease Batten Disease Support and Research Association 120 Humphries Dr., Ste 2 Reynoldsburg, OH 43068 (800) 448-4570 (740) 927-4298 (603) 887-0210 (fax) ??bdsra1@bdsra.com http://www.bdsra.org 1,2,3,4,5,6,8,9; Spanish/Portugese/German/ French materials Batten Disease Support and Research Association, Canadian Chapter c/o Bev Maxim 17 Bell St. Regina, SK CAN S4S 4B7 (306) 789-9047 ??bdsra1@bdsra.org http://www.bdsra.org 1,2,3,4,5,6,7,8,9 National Batten Disease Registry 1050 Forest Hill Rd. Staten Island, NY 10314-6399 (800) 952-9628 (718) 494-5201 (718) 982-6346 (fax) ??dockteeb@nysomr.em1.com 2,3,4,5,5,7 genetic counseling, diagnostic testing BATTEN-MAYOU SYNDROME See: Batten Disease BATTEN-SPIELMEYER-VOGT DISEASE See: Batten Disease BBB SYNDROME See: Opitz Syndrome BBBG SYNDROME See: Opitz Syndrome BECKER MUSCULAR DYSTROPHY See: Muscular Dystrophy BECKWITH-WIEDEMANN SYNDROME Beckwith-Wiedemann Support Network 2711 Colony Rd. Ann Arbor, MI 48104 (800) 837-2976 (parents only) (734) 973-0263 (734) 973-9721 (fax) ??A800BWSN@aol.com http://www.beckwithwiedemann.org 1,2,3,4,6 BEDWETTING See: Incontinence BEHCET'S DISEASE See: Autoimmune Disorders BELL'S PALSY Bell's Palsy Research Foundation 9121 E. Tanque Verde Ste. 105-286 Tuscon, AZ 85749 (520) 749-4614 (520) 749-0489 (fax) ??BellsPalsy@aol.com 2,3,4,6,9 BENIGN CONGENITAL HYPOTONIA See: Spinal Muscular Atrophy BERGER DISEASE See: Kidney Disorders BETA THALASSEMIA MAJOR See: Cooley Anemia BEUREN SYNDROME See: Williams Syndrome BIOTINIDASE DEFICIENCY See: Metabolic Disorders BIRTHMARK See: Nevi, Giant Congenital BLEEDING DISORDERS See: Hemophilia BLEPHAROPHIMOSIS, PTOSIS, EPICANTHUS INVERSUS SYNDROME (BPES) See also: Craniofacial Disorders Blepharophimosis, Ptosis, Epicanthus Inversus Family Network c/o Lynne Schauble SE 820 Meadow Vale Dr. Pullman, WA 99163 (509) 332-6628 ??lschauble@gocougs.wsu.edu 1,2,3,9 BLEPHAROSPASM See: Dystonia BLINDNESS See: Visual Impairments BLOCH-SULZBERGER SYNDROME See: Incontinentia Pigmenti BLOOM SYNDROME See: Cancer; Immune Disorders; Growth Disorders; Short Stature BONE MARROW TRANSPLANT See also: Cancer Blood & Bone Marrow Transplant Information Network 2900 Skokie Valley Rd., Ste B Highland Park, IL 60035 (888) 597-7674 (847) 433-3313 (847) 433-4599 (fax) ??help@bmtnews.org http://www.bmtnews.org 1,2,3,9; legal referral for insurance problems BONE TUMOR-EPIDERMOID CYST-POLYPOSIS See: Peutz-Jeghers Syndrome; Polyposis BONNEVIE-ULRICH SYNDROME See: Turner Syndrome BOOK SYNDROME See: Ectodermal Dysplasias BOURNEVILLE PRINGLE SYNDROME See: Tuberous Sclerosis BOWEL DYSFUNCTION/ IRRITABLE BOWEL SYNDROME See also: Gastrointestinal Disorders International Foundation for Functional Gastrointestinal Disorders (IFFGD) PO Box 170864 Milwaukee, WI 53217 (888) 964-2001 (414) 964-1799 (414) 964-7176 (fax) ??FFGD@iffgd.org http://www.iffgd.org 1,2,4,5 (referrals to local physicians),6,9; One-one telephone support. BRACHIAL PLEXUS INJURY See: Erb Palsy BRACHMANN-DE LANGE SYNDROME See: Cornelia de Lange Syndrome BRAIN ATTACK See: Stroke BRAIN INJURY See also: Aphasia, Acquired Brain Injury Association 105 N. Alfred St. Alexandria, VA 22314 (800) 444-6443 (family helpline) (703) 236-6000 (703) 236-6001 (fax) ??familyhelpline@biaus.org http://www.biausa.org 1,2,3,4,5,6,7,8; Spanish materials Coma Recovery Association, Inc. 807 Carman Avenue Westbury, NY 11590 (516) 997-1826 (516) 997-1613 (fax) http://www.comarecovery.org BRAIN STEM MALFORMATIONS See: Arnold-Chiari Malformation; Joubert Syndrome; Syringomyelia BRAIN TUMORS See also: Acoustic Neuroma; Brain Injury; Cancer; Epilepsy; Pitutitary Disorders/Tumors; Von Hippel-Lindau Syndrome American Brain Tumor Association 2720 River Rd., Ste. 146 Des Plaines, IL 60018 (800) 886-2282 (847) 827-9910 (847) 827-9918 (fax) ??info@abta.org http://www, abta.org 1,2,3,4,5,6, 7; Spanish materials Brain Tumor Foundation for Children, Inc. 1835 Savoy Dr., Ste. 316 Atlanta, GA 30341 (770) 458-5554 (770) 458-5467 (fax) ??btfc@bellsouth.net http://www.btfcgainc.org 1,2,3,4,5,6 materials Brain Tumor Foundation of Canada 650 Waterloo St., Ste. 100 London, ON CAN N6B 2R4 (519) 642-7755 (519) 642-7192 (fax) ??eallman1@juno.com http://www.btfc.org 1,2,3,4,6,8,9; French materials Brain Tumor Society 124 Watertown St., Ste. 3-H Watertown, MA 02472 (800) 770-8287 (617) 924-9997 (617) 924-9998 (fax) ??info@tbts.org http://www.tbts.org 1,2,3,6,7,6 Children's Brain Tumor Foundation 274 Madison Ave., Ste. 1301 New York, NY 10016 (212) 448-9494 (212) 448-1022 (fax) ??cbtfny@aol.com http://www.cbtf.org 1,2,3,4,6,8 Making Headway Foundation, Inc 115 King St. Chappaqua, NY 10514-3460 (914) 238-8384, (914) 238-1693 (fax ??mhf@)makingheadway..org http://www.makingheadway.org 1,8; family support group; one-to-one counseling; learning assistance National Brain Tumor Foundation Cathy Clarence 414 Thirteenth St., Ste. 700 Oakland, CA 94612-2603 (800) 934-2873 (info line) (510) 839-9777 (510) 839-9779 (fax) ??nbtf@braintumor.org http://www.braintumor.org 1,2,3,4,6,8 BRANCHED CHAIN KETONURIA See: Maple Syrup Urine Disease BRANCHER DEFICIENCY See: Glycogen Storage Diseases BRANCHIO-OTO-RENAL SYNDROME See: Craniofacial Disorders; Hearing Impairments; Kidney Disorders BRITTLE BONE DISEASE See: Osteogenesis Imperfecta BROAD THUMB-HALLUX SYNDROME See: Rubinstein-Taybi Syndrome BURKE SYNDROME See: Shwachman Syndrome BURNS Phoenix Society for Burn Survivors 2153 Wealthy South East, Ste. 215 East Grand Rapids, MI 49506 (800) 888-2876 (616) 458-2773 (616) 458-2831 (fax) ??Info@phoenix-society.org http://www.phoenix-society.org 1,2,3,4,5,6,7,9 CALLOSAL AGENESIS See: Agenesis of the Corpus Callosum; Aicardi Syndrome CAMARENA SYNDROME See: Ectodermal Dysplasias CAMPTOMELIC SYNDROME See: Growth Disorders; Short Stature CANAVAN DISEASE See: Leukodystrophy; Tay-Sachs Disease CANCER See also: Bone Marrow Transplant; Brain Tumors; Leukemia; Polyposis American Cancer Society 1599 Clifton Rd. NE Atlanta, GA 30329-4251 (800) 227-2345 (404) 320-3333 (404) 982-3676 (fax) http://www.cancer.org 2,4,5,7,8; Spanish materials Canadian Cancer Society 10 Alcorn Ave, Ste. 200 Toronto, ON CAN M4V 361 (416) 961-7223 (416) 961-4189 (fax) ??lfernand@cancer.ca http://www.cancer.ca 1,2,3,4,5,7,8; French materials Candlelighters Childhood Cancer Foundation 3910 Warner St. Kensington, MD 20895 (800) 366-2223 (301) 962-3520 (phone/fax) ??info@candlelighters.org http://www.candlelighters.org 1,2,3,4,5,7; Survivors of Childhood Cancer program; speakers bureau Childhood Cancer Foundation-Candlelighters Canada 55 Eglinton Ave E, Ste. 401 Toronto, ON CAN M4P 1G8 (800) 363-1062 (Canada only) (416) 489-6440 (416) 489-9812 (fax) ??staff@candlelighters.ca http://www.candlelighters.ca 1,2,3,4,5,6,7; French/Dutch/Finnish/Polish/ German materials CANCER; BRAIN See: Brain Tumors CANCER; GASTROINTESTINAL See: Peutz-Jeghers Syndrome; Polyposis CARBAMYL PHOSPHATE SYNTHETASE (CPS) DEFICIENCY See: Urea Cycle Disorders CARDIAC DISORDERS See: Heart Disorders CARDIO-FACIO-CUTANEOUS SYNDROME See: Heart Disorders; Ichthyosis CAREY SYNDROME See: Ectodermal Dysplasias CARNITINE DEFICIENCY SYNDROMES See also: Acidemia, Organic; Fatty Oxidation Disorder; Mitochondrial Disorders; Muscular Dystrophy CARNITINE PALMITYL TRANSFERASE DEFICIENCY See: Acidemia, Organic; Fatty Oxidation Disorder; Carnitine Deficiency Syndromes; Muscular Dystrophy CARPENTER SYNDROME See: Craniofacial Disorders CARTILAGE-HAIR HYPOPLASlA See: Dwarfism; Growth Disorders; Short Stature CARTILAGNOUS ENCHONDROSES, MULTIPLE See: Ollier Disease CAT'S CRY SYNDROME See: Cri Du Chat Syndrome CAUSALGIA SYNDROME See: Reflex Sympathetic Dystrophy Syndrome CELIAC DISEASE See also: Celiac Sprue; Gluten Intolerance Canadian Celiac Association 190 Britannia Rd. E. Unit 11 Mississauga. ON CAN L4Z 1W6 (800) 363-7296 (Canada only) (905) 507-6208 (905) 507-4673 (fax) http://www.celiac.ca 1,2,4,5,6,7,6,9; French materials Celiac Disease Foundation 13251 Ventura Blvd., #1 Studio City Los Angeles, CA 91604-1838 (818) 990-2354 (818) 990-2379 (fax) ??cdf@celiac.org http://www.celiac.org 1,2,3,9 CELIAC SPRUE See also: Celiac Disease; Gluten Intolerance American Celiac Society 59 Crystal Ave. West Orange, NJ 07052-3570 (973) 325-8837 (973) 669-8808 (fax) ??amerceliacsoc@netscape.net 1,2,4,5,6; speakers bureau American Celiac Society Dietary Support Coalition 59 Crystal Ave. West Orange, NJ 07052 (973) 325-8837 (973) 669-8808 (fax) ??bentleac@umdnj.edu 1,2,3,4,5,6,7,8; speakers bureau CENTRAL HYPOVENTILATION SYNDROME, CONGENITAL See also: Apnea, Sleep; Intestinal Pseudo-Obstruction Syndrome; Ventilator Use Congenital Central Hypoventilation Syndrome Family Support Network 71 Maple St. Oneonta, NY 13820 ??vanderlaanm@hartwick.edu 1,2,3,6,7,9 CEREBELLAR HYPOPLASIA See: Joubert Syndrome CEREBELLAR VERMIS APLASIA/HYPOPLASIA See: Joubert Syndrome CEREBELLO-OCULOCUTANEOUS TELANGIECTASIA See: Ataxia Telangiectasia CEREBELLORETINAL HEMANGIOBLASTOMATOSIS See: Von Hippel-Lindau Syndrome CEREBRAL GIGANTISM See: Sotos Syndrome CEREBRAL PALSY Ontario Federation for Cerebral Palsy 1630 Lawrence Ave. W., Ste. 104 Toronto, ON CAN MGL 1C5 (416) 244-9686 (416) 244-6543 (fax) ??ofcp@ofcp.on.ca http://www.ofcp.on.ca 1,2,3,4,5,6,9; French materials United Cerebral Palsy Associations 1660 L St. NW, Ste. 700 Washington, DC 20036-5602 (800) 872-5827 (202) 776-0406 (202) 973-7197 (TTY) (202) 776-0414 (fax) ??ucpainc@aol.com http://www.ucpa.org 1,2,3,4,5,6,7,8; Spanish materials, provides direct services through 158 affiliate programs United Cerebral Palsy of NYC 80 Maiden Ln., 8th Fl. New York, NY 10038-4811 (212) 683-6700 ??infoucp@aol.com http://www.ucpnyc.org 1,2,3,4,5,6,7,6 CEREBROOCULORENAL DYSTROPHY See: Lowe Syndrome CEREBROSIDE LIPIDOSIS See: Gaucher Disease CEREBROTENDINOUS See: Leukodystrophy; Tay-Sachs Disease CHAGAS, DISEASE See: Autoimmune Disorders CHALASODERMIA See: Connective Tissue Disorders CHANARIN-DORFMAN SYNDROME See: Ichthyosis CHANDS ASSOCIATION See: Ectodermal Dysplasias CHARCOT-MARIE-TOOTH DISEASE see also: Ataxia; Muscular Dystrophy; Myelin Disorders Charcot-Marie-Tooth Association 601 Upland Ave. Upland, PA 19015 (800) 606-2682 (610) 499-7486 (610) 499-7487 (fax) ??cmtassoc@aol.com http://www.charcot-marie-tooth.org 1,2,4,5,7,6,8,9; Spanish materials Charcot-Marie-Tooth International 1 Springbank Dr. St Catharines, ON CAN L2S 2K1 (905) 687-3630 (905) 687-8753 (fax) ??cmtint@vaxxine.com http://www.cmtint.org 1,2,3,5,7,9; Scholarship program for members. CHARGE ASSOCIATION See also: Heart Disorders; Hearing Impairments Velo-Cardio-Facial Syndrome; VATERL Association; Visual Impairments CHARGE Syndrome Foundation 2004 Parkade Blvd. Columbia, MO 65202-3121 (800) 442-7604 (573) 499-4694 (voice/fax) ??marion@chargesyndrome.org http://www.chargesyndrome.org 1,2,3,6,8 CHEDIAK HIGASHI SYNDROME See: Hermansky-Pudlak Syndrome CHEMKE SYNDROME See: Hydrocephalus; Lissencephaly CHIARI MALFORMATION See: Arnold-Chiari Malformation CHILD SYNDROME See: Ichthyosis CHOLESTATIS WITH PERIPHERAL PULMONARY STENOSIS See: Alagille Syndrome CHOLESTERYL ESTER STORAGE DISEASE See: Tay-Sachs Disease CHONDRODYSPLASIA PUNCTATA See: Growth Disorders; Ichthyosis CHORIONIC VILLUS SAMPLING, RELATED DISABILITIES See also: Limb Disorders CVS Parent Network Support Group 15706 Reynolds Ln. Oak Forest, IL 60452 (708) 535-2864 ??midsun@aol.com 1,2,3,4,7,9 CHOROIDEREMIA See: Macular Diseases; Retinitis Pigmentosa; Visual Impairments CHRIST-SIEMENS-TOURAINE SYNDROME See: Craniofacial Disorders; Ectodermal Dysplasias CHROMOSOME 13 & 18 DISORDERS See also: Chromosome 18 Disorders SOFT Canada: Support Organization for Trisomy 18, 13 and Related Disorders 760 Brant St., Ste. 420 Burlington, ON CAN L7R 4B8 (800) 668-0898 (Canada only) (905) 632-7755 (905) 632-5997 (fax) ??barbsoft@aol.com http://www.trisomy.org 1,2,3,4,5,6,8,9; also covers other rare trisomy disorders SOFT: Support Organization for Trisomy 18, 13 and Related Disorders 2982 S. Union St. Rochester, NY 14624 (800) 716-7638 (716) 594-4621 (voice/fax) ??barbsoft@aol.com http://www.trisomy.org 1,2,3,5,6,9; also covers other rare trisomy disorders CHROMOSOME 4p- See also: Wolf-Hirschorn Syndrome Chromosome 4P- Support Group Sharon York 2585 Taylor Longview, WA 98632 (360) 577-9033 ??syork@scattercreek.com CHROMOSOME 5P- See: Cri Du Chat Syndrome CHROMOSOME 8P DISORDERS 8p Duplication Support Group Genetics Ctr. Children's Medical Ctr. 1 Children's Plaza Dayton, OH 45404 (937) 641-3800 (937) 463-5325 (fax) ??genemail@aol.com 3,4,9 CHROMOSOME 9 DISORDERS Chromosome 9p-Network 675 N. Round Table Dr. Las Vegas, NV 89110 (702) 453-0788 (702) 459-4711 (fax) ??beverly.udell@9pminus.org http://www.9pminus.org 1,2,3,6,6,9 Trisomy 9 International Parent Support Children's Hospital of Michigan 3901 Beaubien Blvd. Detroit, MI 48201-2196 (313) 745-4513 (313) 745-4827 (fax) 2,3 CHROMOSOME 17P- See: Smith-Magenis Syndrome CHROMOSOME 11Q- Chromosome 11Q- Research and Resource Group University of Colorado Campus Box 295 Boulder, CO 80309 ??biasca@colorado.edu http://ucsu.colorado.edu/~bia CHROMOSOME 18 DISORDERS See also: Chromosome 13 & 18 Disorders Chromosome 18 Registry & Research Society 6302 Fox Head San Antonio, TX 78247 (210) 657-4968 (voice/fax) ??office@chromosome18.org http://www.chromosome18.org 1,3,4,6,6,9 CHROMOSOME 21 RING See: Chromosome Deletions CHROMOSOME 22 RING See also: Chromosome Deletions Chromosome 22 Central 232 Kent Ave. Timmins, ON CAN P4N 3C3 (705) 268-3099 (voice/fax) ??mum2_1@hotmail.com http://www.nt.net/~a815/ chr22.htm 1,2,3,9: Covers all Chromosome 22-related disorders. CHROMOSOME 3, MONOSOMY 3P2 See: Chromosome Deletions CHROMOSOME 4 RING See; Chromosome Deletions; Wolf-Hirschhorn Syndrome CHROMOSOME 45,X See: Turner Syndrome CHROMOSOME 45,X/46,XX See: Turner Syndrome CHROMOSOME 46XY/47,XXY See: Klinefelter Syndrome CHROMOSOME 47,XXY See: Klinefelter Syndrome CHROMOSOME 47,XYY See: Klinefelter Syndrome CHROMOSOME 48,XXXY See: Klinefelter Syndrome CHROMOSOME 48,XXYY See: Klinefelter Syndrome CHROMOSOME 49,XXXXY See: Klinefelter Syndrome CHROMOSOME 9 RING See: Chromosome Deletions; Craniofacial Disorders CHROMOSOME DELETIONS Chromosome Deletion Outreach, Inc. Box 724 Boca Raton, FL 33429-0724 (888) 236-6880 (561) 391-5098 (561) 395-4252 (fax) ??cdo@att.net http://www.members.aol.com/cd ousa/cdo.htm 1,2,3,9; Also deals with chromosome translocations CHROMOSOME DISORDERS See also: Chromosome 13 & 15 Disorders Chromosome 22 Central 232 Kent Ave. Timmin, ON CAN P4N 3C3 (705) 268-3099 (voice/fax) [Omega]mum2_1@hotmail.com http://www.nt.net/~a815/chr22. htm 1,2,3,9 CHROMOSOME INVERSIONS National Center on Chromosome Inversions 1029 Johnson St. Des Moines, IA 50315 (515) 287-6798 (voice/fax) ??Jackie/Barker@hotmail.com 3,9 CHROMOSOME TRANSLOCATIONS See: Chromosome Deletions CHROMOSOME TRISOMY DISORDERS See: Chromosome 13 & 18 Disorders CHRONIC ENCEPHALITIS & EPILEPSY See: Rasmussen Syndrome CHRONIC FATIGUE SYNDROME CFIDS Association of America PO Box 220398 Charlotte, NC 28222-0398 (800) 442-3437 (704) 365-9755 (fax) ??info@cfids.org http://www.cfids.org 1,2,4,6,8 CHRONIC INFLAMMATORY DEMYELINATING POLYNEUROPATHY See: Autoimmune Disorders CHRONIC INFLAMMATORY DEMYELINATING POLYRADICULONEUROPATHY See: Guillain-Barre Syndrome CHRONIC LOCALIZED ENCEPHALITIS See: Rasmussen Syndrome CITRULLINEMIA See: Urea Cycle Disorders CLEFT PALATE See also: Craniofacial Disorders Cleft Palate Foundation 104 Estes Dr., Ste. 204 Chapel Hill, NC 27514 (800) 242-5338 (919) 933 -9044 (919) 933-9604 (fax) ??cleftline@aol.com http://www.cleft.com 2,4,5,6,7; Spanish materials CMV, CONGENITAL See: Cytomegalovirus (CMV), Congenital COBALAMIN (B12) DEFIENCY See also: Metabolic Disorders Cobalamin Network PO Box 174 Thetford Center, VT 05075-0174 (802) 785-4029 ??suebee18@valley.net 3 COCKAYNE SYNDROME See also: Growth Disorders; Xeroderma Pigmentosum Share and Care Cockayne Syndrome Network c/o Teresa Wall PO Box 552 Stanleytown, VA 24168-0552 (540) 629-2369 (540) 647-3739 (fax) ??cockayne@kimbanet.com 1,2,3,9; Spanish and Japanese materials COFFIN-SIRIS' SYNDROME See: Ectodermal Dysplasias COFFIN-LOWRY SYNDROME Coffin-Lowry Syndrome Foundation 3045 255th Ave. SE Issaquah, WA 98209 (425) 427-0939 ??clsfoundation@yahoo.com http://www.freeyellow.com/ members3/clsf/index/html 1,2,3,9 COGAN'S SYNDROME See: Autoimmune Disorders COLITIS See: Crohn Disease & Colitis COLOBOMA See: Visual Impairments COMPLEX REGIONAL PAIN SYNDROME See: Reflex Sympathetic Dystrophy Syndrome CONGENITAL ADRENAL HYPERPLASIA (CAH) See: Adrenal Disorders CONGENITAL LIPOID HYPERPLASlA See: Adrenal Disorders CONGENITAL SENSORY NEUROPATHY WITH ANHIDROSIS See: Familial Dysautonomia CONNECTIVE TISSUE DISORDERS See also: Ehlers-Danlos Syndrome; Epidermolysis Bullosa, Dystrophic; Marfan Syndrome; Pseudoxanthoma Elasticum (PXE) Coalition for Heritable Disorders of Connective Tissue 382 Main St. Port Washington, NY 11050 (800) 862-7326 (516) 883-8712 (516) 883-8040 (fax) ??staff@marfan.org http://www.marfan.org 2,7 CONRADI-HUNERMANN SYNDROME See: Growth Disorders; Ichthyosis COOLEY ANEMIA/THALASSEMIA MAJOR See also: Autoimmune Disorders Cooley's Anemia Foundation 26th Ave., Ste. 203 Flushing, NY 11354 (800) 522-7222 (718) 321-2873 (718) 321-3340 (fax) ??nacf@aol.com http://www.thalassemia.org 1,2,3,4,5,6,7,8,9; Italian, Greek, Chinese materials available in limited quantity Thalassemia Action Group 12909 26th Ave., Ste. 203 Flushing, NY 11354 (800) 522-7222 (718) 321-2873 (718) 321-3340 (fax) ??ncaf@aol.com 1,2,3,4,5,6,7,8,9 Thalassemia Foundation 32 Fern Ave, Weston, ON CAN M9N 1M2 (416) 242-8425 ??josie.sirna@utoronto.ca 1,2,3,4,5,6,8,9 COPPER DEFICIENCY, X-LINKED See: Menkes Disease COPPER MALABSORPTION, X-LINKED See: Menkes Disease CORI DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy CORNELIA DE LANGE SYNDROME Cornelia de Lange Syndrome Foundation 302 W. Main St., #100 Avon, CT 06001-3681 (800) 753-2357 (860) 676-8166 (860) 676-8337 (fax) ??cdlsintl@iconn.net http://cdlsoutreach.org CORPUS CALLOSUM DISORDERS See: Agenesis of the Corpus Callosum; Aicardi Syndrome COX DEFICIENCY See: Leigh Disease; Mitochondrial Disorders CRANIOCARPOTARSAL DYSTROPHY See: Freeman-Sheldon Syndrome CRANIOECTODERMAL SYNDROME See: Ectodermal Dysplasias CRANIOFACIAL DISORDERS See also: Apert Syndrome/ Blepharophimosis, Ptosis, Epicanthus Inverus Syndrome (BPES); Chromosome11q Disorders; Cleft Palete; Dubowitz Syndrome; Freeman-Sheldon Syndrome; Goldenhar Syndrome; Holoprosencephaly; Microtia; Moebius Syndrome; Nager & Miller Syndromes; Nevi, Giant Congential; Robinow Syndrome; Rubinstein-Taybi Syndrome; Sturge-Weber Syndrome; Treacher Collins Syndrome; Velo-Cardio-Facial Syndrome AboutFace International 123 Edwards St., Ste 1003 Toronto, ON CAN M5G1E2 (800) 665-3223 (416) 597-2229 (416) 944-2488 (fax) ??abtface@interlog.com http://www.interlog.com/abtface 1,2,3,4,5,6,7 AboutFace USA 1407-1/2 N. wells Chicago, IL 60610 (888) 486-1209 ??AboutFace2000@aol.com http://www.aboutface2000.org 1,2,3,4,5,6,7 Craniofacial Foundation of America c/o Terri Farmer 975 E. Third St. Chattanooga, TN 37403 (800) 418-3223 (423) 778-9192 (423) 778-8172 (fax) ??dnkm90@prodigy.com http://www.erlanger org/cranio 1,2,3,5,7 Craniosynostosis and Parents Support, Inc. (CAPS) 1420 S. Gasaway Dr. Derby, KS 67037 (877) 686-CAPS (2277) (316) 789-9924 ??stpnjep@aol.com http://caps2000.org FACES--The National Craniofacial Association PO Box 11082 Chattanooga, TN 37401 (800) 332-2373 (423) 266-1632 (423) 267-3124 (fax) ??faces@mindspring.com http://www.faces-cranio.org 1,2,3,5,9; financial assistance for medical-related travel Forward Face: The Charity for Children with Craniofacial Conditions Inst. of Reconstructive Plastic Surgery 317 34th St., Rm. 901A New York, NY 10016 (800) 393-3223 (212) 684-5860 (212) 684-5864 (fax) 1,2,3,4 Let's Face It PO Box 29972 Bellingham, WA 98228-1972 (360) 676-7325 ??letsfaceit@faceit.org http://www.faceit.org/faceit/ 1,3; Publishes annual resource guide National Foundation for Facial Reconstruction 317 E. 34th St., Rm. 901 New York, NY 10016 (212) 263-6656 (212) 263-7534 (fax) ??info@nffr.org http://www.nffr.org 2,3,4,8,9 Tennesse Craniofacial Center PO Box 280297 Dallas, TX 75228 (800) 535-3643 (972) 994-9902 (972) 240-7607 (fax) ??dnkm90@prodigy.com http://www.masterlink.comchildren 1,2,3,4,5,6,9; Spanish materials; Financial assistance for related expenses; Annual family retreat CRANIOSYNOSTOSIS See: Craniofacial Disorders CRI DU CHAT SYNDROME 5p- society PMB-502 7108 Katella Ave. Stanton, CA 90680 (888) 970-0777 (714) 901-1544 (562) 920-5240 (fax) ??fivepminus@aol.com http://www.fivepminus.org 1,2,3,6,7,9 CRIB DEATH See: Sudden Infant Death Syndrome (SIDS) CRIGLER-NAJJAR See: Liver Disease and Trasplant CROHN DISEASE & COLITIS CCFA: Crohn's & Colitis Foundation of America 386 Park Ave. S., 17th Fl. New York, NY 10016-8804 (800) 932-2423 (212) 685-3440 (212) 779-4098 (fax) ??info@ccfa.org http://www.ccfa.org 1,2,3,4,5,6,7,8,9 Spanish materials Crohn's and Colitis Foundation of Canada 21 St. Clair Ave. E., Ste. 301 Toronto, ON CAN M4T 1L9 (800) 387-1479 (Canada only) (416) 920-5035 (416) 929-0364 (fax) ??ccfc@ccfc.ca http://www.ccfc.ca 1,2,5,6,8,9; French materials Pediatric Crohn's & Colitis Association PO Box 188 Newton, MA 02168 (617) 489-5854 (voice/fax) 1,2,3,4,7,8 CROUZON DISEASE See: Craniofacial Disorders CURLY HAIR-ANKYLOBLEPHARON-NAIL DYSPLASIA (CHANDS) See: Ectodermal Dysplasias CUSHING SYNDROME See: Adrenal Disorders CUTIS HYPERELASTICA See: Ehlers-Danlos Syndrome CUTIS LAXA See: Connective Tissue Disorders CYCLIC VOMITING SYNDROME Cyclic Vomiting Syndrome Association 3585 Cedar Hill Rd. NW Canal Winchester, OH 43110 (614) 837-2586 (phone/fax) ??cvsadwaites@msn.com http://www.beaker.iupui.edu/cus a 1,2,3,4,5,6,8,9, CYSTIC FIBROSIS Canadian Cystic Fibrosis Foundation 2221 Yonge St., Ste. 601 Toronto, ON CAN M4S 2B4 (800) 378-2233 (Canada only) (416) 485-9149 (416) 485-0960 (fax) ??info@ccff.ca http://www.ccff.ca/~cfwww/ index.html 1,2,5,6,7,8,9; French, German, Spainish, and Russian brochures and booklets; Videos available in French and English. Cystic Fibrosis Foundation 6931 Arlington Rd., 2nd Fl. Bethesda, MD 20814 (800) FIGHT CF (344-4823) (301) 951-4422 (301) 951-6378 (fax) ??info@cff.org http://www.cff.org 1,2,4,5,6,7,8,9 CYSTINOSIS See also: Kidney Disorders Cystinosis Foundation 2516 Stockbridge Dr. Oakland, CA 94611 (800) 392-8458 (510) 482-8119 ??jd2jptz@qmis.net http://www.cystinosis.com 1,2,3,6,7,8, Italian and French materials. CYSTINURIA See also Kidney Disorders Cystinuria Support Network 21001 NE 36th St. Sammamish, WA 98074 (425) 868-2996 (425) 897-0675 (fax) ??cystinuria@aol.com http://www.cystinuria.com 1,3 CYTOCHROME C OXIDASE (COX) DEFICIENCY See: Lactic Acidosis, Mitochondrial Disorders CYTOMEGALOVIRUS (CMV), CONGENITAL Clinical Care Center CMV Registry, Feigin Ctr. Ste. 150 1102 Bates St. Houston, TX 77030-2399 (832) 824-4387 (832) 825-4347 (fax) ??cmv@bcm.tmc.edu http://www.bcm.tmc.ed4/pedi/ infect/cmv. 1,2,3,4 DANDY-WALKER SYNDROME see also: Hydrocephalus Dandy Walker Syndrome Network 5030 142nd Path W. Apple Valley, MN 55124 (612) 423-4008 2,3,4 DARIER DISEASE See: Ichthyosis DE BARSEY SYNDROME See: Connective Tissue Disorders DE BARSEY-MOENSDIERCKS SYNDROME See: Connective Tissue Disorders DE MORSIER SYNDROME See: Septo-Optic Dysplasia DEAF-BLIND See also: Hearing Impairments; Visual Impairments American Association of the Deaf-Blind 814 Thayer Ave., Ste. 302 Silver Spring, MD 20910 (301) 588-6545 (TDD) (301) 588-8705 (fax) 1,2,6,7 National Family Association for Deaf-Blind 111 Middle Neck Rd. Sands Point, NY 11050-1129 (800) 255-0411, ext.275 (516) 944-8637 (TDD) (516) 944-7302 (fax) ??nfadb@aol.com http://www.nfadb.org 1,2,3,4,6,7,9; Newsletter available by request in braille, on disk (WP5.1) or large print. The Canadian Deafblind and Rubella Association c/o The W. Ross Macdonald School 350 Brant Ave. Brantford, ON CAN N3T 3J9 (519) 754-0729 (519) 754-5400 (fax) 1,2,7 DEAFNESS See: Hearing Impairments DEBRANCHER ENZYME DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy DECARBOXYLICACIDURIA See: Fatty Oxidation Disorder DECEREBRATE DEMENTIA See: Subacute Sclerosing Panencephalitis DEJERINE SOTTAS DISEASE See: Muscular Dystrophy DEJERINE-LANDOUZY See: Muscular Dystrophy; Facio-Scapulo-Humeral DELTA STORAGE POOL DISEASE See: Hermansky-Pudlak Syndrome DENTOOCULOCUTANEOUS SYNDROME See: Ectodermal Dysplasias DERMATITIS HERPETIFORMIS See: Celiac Disease; Celiac Sprue; Gluten Intolerance DERMATOCHALASIA See: Connective Tissue Disorders DERMATOLYSIS See: Connective Tissue Disorders DERMATOMEGALY See: Connective Tissue Disorders DERMATOMYOSITIS See: Arthritis; Muscular Dystrophy; Myositis DEMOODONTODYSPLASIA See: Ectodermal Dysplasias DERMOTRICHIC SYNDROME See: Ectodermal Dysplasias DEVELOPMENTAL DISABILITIES See: Mental Retardation DIABETES INSPIDUS See also: Autoimmune Disorders The Diabetes Insipidus Foundation Inc. 4533 Ridge Dr. Baltimore, MD 21229 (410) 247-3953 (610) 326-7955 (parent support) ??diabetesinsipidus@maxinter.net http://diabetesinsipidus.maxinter. net 1,2,3,4 DIABETES MELLITUS See also: Autoimmune Disorders; Kidney Disorders American Diabetes Association National Service Ctr. 1660 Duke St. Alexandria, VA 22314 (800) 342-2383 (703) 549-1500 (703) 549-6995 (fax) http://www.diabetes.org 1,2,4,5,6,7,6 Canadian Diabetes Association 15 Toronto St., Ste. 800 Toronto, ON CAN M5C 2E3 (416) 363-3373 (416) 363-3393 (fax) ??info@diabetes.ca 1,2,4,6,7,8; French Materials DIGESTIVE DISORDERS See: Celiac Disease; Celiac Sprue; Crohn Disease & Colitis; Gluten Intolerance; Intestinal Pseudo-Obstruction Syndrome; Ostomy DIGESTIVE DYSMOTILITY See: Intestinal Pseudo-Obstruction Syndrome DIMORSIER SYNDROME See: Growth Disorders DISCOID LUPUS See: Autoimmune Disorders DOWN SYNDROME Association for Children with Down Syndrome 4 Fem PL. Plainview, NY 11803 (516) 933-4700 (516) 933-7524(fax) ??info@acds.org http://www.acds.org 1,2,3,4, bilingual services Canadian Down Syndrome Society 811 14th St. NW Calgary, AB CAN T2N 2A4 (800) 883-5608 (Canada only) (403) 270-8500 (403) 270-8291 (fax) ??dsinfo@cdss.ca http://www.cdss.ca 1,2,3,4,5,6,7 French materials Down Syndrome Society of Rhode Island 99 Bald Hill Rd. Cranston, RI 02920 (401) 460-5337 (fax) ??dssri@aol.com 1,2,3,4 Foundation for Children with Down Syndrome 3920 Blaisdell Ave. S., Ste. 1 Minneapolis, MN. 55409 (918) 836-8698 (612) 822-1032 (fax) http://www.ffcwds.org Foundation for Children with Down Syndrome (NJ office) 355 Bennetts Mills Rd. Jackson, NJ 08527 (718) 623-0121 International Foundation for Genetic Research 500A Garden City Dr. Pittsburgh, PA 15146 (412) 823-6380 (412) 373-7713 (fax) ??tmf@pennet.com http://www.pennet.com/ chuckdet/index.html 1,2,4,7,8 National Down Syndrome Congress 7000 Peachtree Dunwoody Rd., Bldg. 5, Ste. 100 Atlanta, GA 30328-1655 (800) 232-6372 (770) 604-9500 (770) 604-9898 (fax) ??ndsccenter@aol.com http://www.ndsccenter.org 1,2,4,5,6,7 National Down Syndrome Society 666 Broadway, 8th Fl. New York, NY 10012-2317 (800) 221-4602 (212) 460-9330 (212) 979-2873 (fax) ??info@ndss.org http://www.ndss.org 1,2,3,4,5,6,7,8 Trisomy 21 Reseasrch Foundation 933 First Colonial Rd., Ste. 109 Virginia Beach, VA 23454 (757) 425-1969 (757) 425-1822 (fax) ??illeichtman@macs.net http://wwwtri21.org 2,4,7,8,9 DUAL SENSORY IMPAIRMENTS See: Deaf-Blind DUBOWITZ SYNDROME See also: Craniofacial Disorders; Growth Disorders Dubowitz Syndrome Parent Support Network PO Box 2441 Vincennes, IN 47591 (812) 886-0575 (812) 886-1128 (fax) ??INATTIC1@aol.com http://dubowitz.org DUCHENNE MUSCULAR DYSTROPHY See: Muscular Dystrophy DWARFISM See also: Growth Disorders; Short Stature Billy Barb/Foundation 929 W. Olive Ave., Ste. C Burbank, CA 91506 (818) 953-5410 http://www.rth.org/bbf/ Metatropic Dwarf Registry 3393 Geneva Drive Santa Clara, CA 95051 (408) 244-6354 (408) 296-6317 (fax) ??figone@netgate.net http://www.u2.netgate.net/~cfig one/mdr/Index.htm 2,3; physician referrals; international membership DYGENESIS OF THE CORPUS CALLOSUM See: Agenesis of the Corpus Callosum DYSAUTONOMIA National Dysautonomia Research Foundation (NDRF) PO Box 211153 Eagan, MN 55121-2553 (651) 267-0525 (651) 267-0524 (fax) ??ndrf@ndrf.org http://www.ndrf.org 1,2,3,4,5,6,7,8,9 DYSAUTONOMIA, FAMILIAL See: Familial Dysautonomia DYSKERATOSIS, CONGENITAL See: Ectodermal Dysplasias DYSLEXIA See also: Attention Deficit Disorder; Learning Disabilities Dyslexia Research Institute 5746 Centerville Rd. Tallahassee, FL 32308 (850) 893-2216 (850) 893-2440 (fax) ??dri@talstar.com http://www.dyslexia-add.org 2,3,4 The International Dyslexia Association 8600 La Salle Rd. Chester Bldg., Ste. 382, Baltimore, MD 21286-2044 (800) 222-3123 (410) 296-0232 (410) 321-5069 (fax) ??info@interdys.org http://www.interdys.org 1,2,3,4,5,6,7,8,9; Spanish materials Recording for the Blind & Dyslexic 20 Roszel Rd. Princeton, NJ 08540 (609) 452-0606, (609) 520-7990 (fax) 2; Extensive lending library of academic textbooks on audiocassette (all levels) DYSOSTOSIS, ACROFACIAL, NAGER TYPE See: Nager & Miller Syndromes DYSOSTOSIS, MANDIBULOFACIAL See: Nager & Miller Syndromes; Treacher Collins Syndrome DYSOSTOSIS, METAPHYSEAL, TYPE B IV See: Shwachman Syndrome DYSOSTOSIS, POSTAXIAL ACROFACIAL See: Nager & Miller Syndromes DYSPLASTIC ANGIECTASIA, CONGENITAL See: Klippel - Trenaunay Syndrome DYSTONIA Dystonia Medical Research Foundation One E. Wacker Dr., Ste. 2430 Chicago, IL 60601 (312) 755-0198 (312) 803-0138 (fax) ??jfeeley@dystoniafoundation.org http://www.dystoniafoundation.org/ 1,2,3,4,5,6,7,8,9 Dystonia Medical Research Foundation--Canada 116-230 Heath St., W. Toronto, ON CAN M5P 1N8 (800) 361-8061 (Canada only) (416) 488-6974 (416) 488-8323 ??Dystonia@Dystonia-foundation.org 1,2,3,5,6,8 DYSTROPHIC EPIDERMOLYSIS BULLOSA See: Epidermolysis Bullosa, Dystrophic EATON-LAMBERT SYNDROME See: Muscular Dystrophy ECTODERMAL DYSPLASIAS Canadian Society for Ectodermal Dysplasia (Western Canada) 304 Hawkwood Blvd., NW Calgary, AB CAN T3G 2Y5 (416) 664-6121 2,3,4 National Foundation for Ectodermal Dysplasia 410 E. Main St. PO Box 114 Mascoutah, IL 62258-0114 (618) 566-2020 (618) 566-4718 (fax) ??nfed1@aol.com http://www.nfed.org 1,2,3,4,6,7,8,9 ECTRODACTYLY-ECTODERMAL DYSPLASIA-CLEFT LIP/PALATE (EEC) SYNDROME See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias EEC SYNDROME See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias EHLERS-DANLOS SYNDROME See also: Connective Tissue Disorders; Glaucoma; Visual Impairments Ehlers-Danlos National Foundation 6399 Wilshire Blvd. #510 Los Angeles, CA 90048 (323) 651-3038 (323) 651-1366 (fax) ??ednfboard@aol.com http://www.ednf.org 1,2,3,4,6,8 EINSTEIN SYNDROME See: Hearing Impairments; Kidney Diseases, Hereditary; Vision Impairments ELASTORRHEXIS See: Connective Tissue Disorders ELASTOSIS DYSTROPHICA SYNDROME See: Pseudoxanthoma Elasticum (PXE) ELEPHANTITIS See: Lymphedema ELLIS-VAN CREVELD SYNDROME See: Ectodermal Dysplasias EMERY-DREIFUSS MUSCULAR DYSTROPHY See: Muscular Dystrophy EMG SYNDROME See: Beckwith-Wiedemann Syndrome ENCEPHALITIS, CHRONIC LOCALIZED See: Rasmussen Syndrome ENCEPHALITIS & EPILEPSY, CHRONIC See: Rasmussen Syndrome ENCEPHALITIS, RASMUSSEN See: Rasmussen Syndrome ENCEPHALOFACIAL ANGIOMATOSIS See." Sturge-Weber Syndrome EHCEPHALOMYELOPATHY See: Lactic Acidosis; Mitochondrial Disorders ENCEPHALOMYELORADICULOPATHY, ACUTE ISSEMINATED See: Guillain-Barre Syndrome ENCEPHALOTRIGEMINAL ANGIOMATOSIS See: Sturge-Weber Syndrome ENCHONDROMATOSIS, ENCHONDROSES See: Ollier Disease ENDOCARDIAL FIBROSLASTOSIS See: Heart Disorders ENTEROPATHY, GLUTENSENSITIVE See: Celiac Disease; Celiac Sprue; Gluten Intolerance EOSINOPHILIC GRANULOMA See: Histiocytosis EPICANTHUS INVERSUS See: Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES) EPIDERMOLYSIS BULLOSA, DYSTROPHIC See also: Connective Tissue Disorders DEBRA: Dystrophic Epidermolysis Bullosa Research Association 40 Rector St., Ste. 1403 New York, NY 10006 (212) 513-4090 (212) 513-4099 (fax) ??debraorg@crds.com http://www.debra.org 1,2,3,4,5,6,7,8, Spanish materials EPIDERMOLYTIC HYPERKERATOSIS See: Ichthyosis EPILEPSY See also: Seizure Disorders American Epilepsy Society 842 North Main St. West Hartford, CT 06117-2507 (860) 586-7505 (860) 586-7550 (fax) ??info@aesnet.org http://www.aesnet.org 2,8 Epilepsy Canada 1470 Peel St., Ste. 745 Montreal, QUE CAN H3A 1T1 (877) SEIZURE (734-0873) (514) 845-7855 (514) 845-7866 (fax) ??epilepsy@epilepsy.ca http://www.epilepsy.ca 1,2,4,5,6,7,8; French materials Epilepsy Foundation of America 4351 Garden City Dr. Landover, MD 20785-2267 (800) 332-4050 (301) 459-3700 (301) 577-2684 (fax) ??postmaster@efa.org http://www.efa.org 1,2,4,5,6,7; Spanish materials EPILOIA See: Tuberous Sclerosis ERB PALSY Brachial Plexus/Erb's Palsy Support and Informational Network, Inc. PO Box 23 Larsen, WI 54947 (920) 836-9587 http://www.customforum.com/nationalbpi ??nationalbpi@powernetonline. com 1,2,3,4,5,6 ERB/DUCHENNE PALSY See: Erb Palsy ERDHEIM-CHESTER DISEASE See: Histiocytosis ERYTHROBLASTOPHTHISIS See: Anemia, Aplastic ERYTHROBLASTOTIC ANEMIA OF CHILDHOOD See: Cooley Anemia ERYTHROID HYPOPLASIA, CONSTITUTIONAL See: Anemia, Diamond-Blackfan ERYTHROHEPATIC PROTOPORPHYRIA See: Liver Disorders; Porphyria ERYTHROKERATODERMIAS See: Ichthyosis ERYTHROPHAGOCYTIC LYMPHOHISTIOCYTOSIS, FAMILIAL See: Histiocytosis ESOPHAGEAL ATRESIA See: VATERL Association EVANS SYNDROME See also: Autoimmune Disorders; Neutropenia Evans Syndrome Support and Research Group c/o Lou Addington 5630 Devon St. Port Orange, FL 32127 (904) 760-3031 (904) 760-5583 (fax) 73142.1315@compuserve.com 3,4,9 EXOMPHALOS-MACROGLOSSIA-GIGANTISM (EMG) SYNDROME See: Beckwith-Wiedemann Syndrome EXOSTOSES, MULTIPLE HEREDITARY Multiple Hereditary Exostoses (MHE) Coalition http://www.geocities/ mhecoalition MHE and Me--A Support Group or Kids With Multiple Hereditary Exostoses 14 Stony Brook Dr. Pine Island, NY 10969 (845) 258-6058 ??mheanddme@yahoo.com http://www.geocities.com/ mheandme 1, (on Web site),2,3; Some info. in Spanish MHE Family Support Group Chele Zelina 8838 Holly Ln. Olmstead Falls, OH 44138 ??chelezl@aol.com http://www.radix.net/~hogue/ mhe.htm EXTRACORPOREAL MEMBRANE OXYGENATION ECMO Moms and Dads International Parent Support PO Box 53848 Lubbock, TX 79453 (806) 892-3348 (806) 792-1289 (fax) ??bgw@odsy.net 2,3, FABRY DISEASE See also: Tay-Sachs Disease International Center for Fabry Disease Dept. of Human Genetics Mt. Sinai School of Medicine 5th Ave. at 100th St. Box 1498 New York, NY 10029 (866) 322-7963 (for parents) (212) 659-6700 (212) 360-1809 (fax) ??fabry.disease@mssm.edu http://www.mssm.edu/crc/Fabry 1,2,3,7,9 FACIAL DISFIGUREMENT See: Craniofacial Disorders FACIAL PARALYSIS See: Bell's Palsy FACIO-AURICULO-VERTEBRAL ANOMALY See: Goldenhar Syndrome FACIO-CARDIO-CUTANEOUS SYNDROME See: Cardio-Facio-Cutaneous Syndrome FACIOGENITAL SYNDROME See: Aarskog Syndrome FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY FSH Society, Inc. 3 Westwood Rd. Lexington, MA 02420 (781) 860-0501 (781) 860-0599 (fax) ??carol.perez@fshsociety. org http://www.fshsociety.org 1,2,3,4,5,6,7,8,9 FAMILIAL ATAXIA See: Ataxia; Friedreich Ataxia FAMILIAL DYSAUTONOMIA Dysautonomia Foundation 343 Clarke Ave. W., Ste. 1103 Thornhill, ON CAN L4J 7K5 (905) 882-7725 (905) 764-7752 (fax) 1,2,3,4,5,6,8,9 Dysautonomia Foundation 633 3rd Ave., 12th Fl. New York, NY10017 (212) 949-6644 (212) 682-7625 (fax) 1,2,3,4,5,6,7,8,9 FAMILIAL PEMPHIGUS See: Ichthyosis FAMILIAL SPLENIC ANEMIA See: Gaucher Disease FANCONI ANEMIA See: Anemia, Fanconi FANCONI II See: Cystinosis FANCONI PANMYELOPATHY See: Anemia, Fanconi FARBER DISEASE See: Tay-Sachs Disease FAS/FAE See: Fetal Alcohol Syndrome/Effect FATTY OXIDATION DISORDER See also: Metabolic Disorders FOD Family Support Group 805 Montrose Dr. Greensboro, NC 27410 (336) 547-8682 ??fodgroup@aol.com http://www.fodsupport.org 1,2,3,7 FEMALE SEX CHROMOSOME DISORDERS See: Turner Syndrome FETAL ALCOHOL SYNDROME/EFFECT Council on Alcoholism & Drug Abuse of Bergen, Inc. 10 E. Broadway Hackensack, NJ 07601 (201) 488-8680 (201) 488-8724 (fax) Family Empowerment Network: Supporting Families Affected by FAS/FAE 517 Lowell Center 610 Langdon St. Madison, WI 53703 (800) 462-5254 (608) 262-6590 (608) 265-3352 (fax) ??fen@mail.dcs.wisc.edu 1,2,3,4,6,7; Spanish materials Fetal Alcohol Education Program 1975 Main St. Concord, MA 01742 (508) 369-7713 2,3,4,9 National Organization on Fetal Alcohol Syndrome 216 G. St., NE Washington, DC 20002 (800) 66 NOFAS (66327) (info. line) (202) 785-4585 (202) 466-6456 (fax) ??nofas@erols.com http://www.nofas.org 1,2,3,4, available in English and Spanish The Fetal Alcohol Syndrome Family Resource Institute PO Box 2525 Lynnwood, WA 98036 (800) 999-3429 (253) 531-2878 (253) 531-2668 (fax) ??vicfas@hotmail.com http://www.accessone.com/ ~delin 1,2,3,4,5,6,9 Fetal Alcohol Support Network 2266 Homeland Dr. Mississauga, ON CAN L5K 1G6 (905) 822-0733 (voice/fax) 1,2,3,4,9 FETAL FACE SYNDROME See: Robinow Syndrome FETAL IRITIS SYNDROME See: Norrie Disease FG SYNDROME See also: Opitz Syndrome FG Syndrome Family Alliance, Inc. 3839 NW Eastview Pl. Corvallis, OR 97330 (541) 753-8075 http://www.fg-syndrome.org FIBROMYALGIA See: Arthritis FIBRODYSPLASIA OSSIFICANS PROGRESSIVA International Fibrodysplasia Ossificans Progressiva Association PO Box 196217 Winter Springs, FL 32719-6217 (407) 365-4194 (407) 365-3213 (fax) FIBROUS DYSPLASIA, MONOSTOTIC, POLYSTOTIC See: McCune-Albright Syndrome FIRST AND SECOND BRANCHIAL ARCH SYNDROME See: Goldenhar Syndrome FISCHER SYNDROME See: Guillain-Barre Syndrome FISCHER-JACOBSEN-CLOUSTON SYNDROME See: Ectodermal Dysplasias FOCAL DERMAL HYPOPLASIA (FDH) SYNDROME See: Craniofacial Disorders; Ectodermal Dysplasias; Hearing Impairments FOLATE METABOLISM; INBORN ERROR OF See: Cobalamin (B12) Defiency FOOD ALLERGY See also: Asthma & Allergy The Food Allergy Network 10400 Eaton Pl., Ste. 107 Fairfax, VA 22030-2208 (800) 929-4040 (703) 691-2713 (fax) ??fan@worldweb.net http://www.foodallergy.org 1,2,3,4,6,7 FORBES DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy FRAGILE X SYNDROME See also: Attention Deficit Disorder; Autism; Learning Disabilities FRAXA Research Foundation 45 Pleasant St. Newburyport, MA 01950 (978) 462-1866 (978) 463-9985 (fax) ??info@fraxa.org http://www.fraxa.org 1,2,3,5,7,8,9; Internet mailing list National Fragile X Foundation 171 12th St., Ste. 100 Oakland, CA 94607-4911 (800) 688-8765 (510) 763-6223 (fax) ??NATLFX@sprintmail.com http://www.Fragile.X.org 1,2,3,4,5,6,7,8 FRANCHESCHETTI-KLEIN SYNDROME See: Treacher Collins Syndrome FRAXA See: Fragile X Syndrome FREDREICH DISEASE See: Ataxia; Friedreich Ataxia FREDREICH TABES See: Ataxia; Friedreich Ataxia FREEMAN-SHELDON SYNDROME See also: Craniofacial Disorders Freeman-Sheldon Parent Support Group 509 E. Northmont Wy. Salt Lake City, UT 84103 (801) 364-7060 ??fspsg@aol.com http://www.fspsg.org 1,2,3,4,7,9, FRIEDREICH ATAXIA See also: Ataxia; Muscular Dystrophy Canadian Association of Friedreich's Ataxia 5620 C A Jobin St. Montreal, QUE CAN H1P 1H8 (514) 321-8684 (514) 321-9257 (fax) http://www.cam.org/~acaf 1,2,8,9; French materials FUCOSIDOSIS See: Tay-Sachs Disease FULLER-ALBRIGHT SYNDROME See: McCune-Albright Syndrome FULMINATING HYPERPYREXIA See: Malignant Hyperthermia GALACTOSE-1-PHOSPHATE URIDYL TRANSFERASE DEFICIENCY See: Galactosemia GALACTOSEMIA See also: Metabolic Disorders, Liver Disease Parents of Galactosemic Children Inc. 885 Del Sol St. Sparks, NV 89436 (775) 626-0885 http://www.galactosemia.org 1,2,5,6 GARDNER SYNDROME See: Peutz-Jeghers Syndrome; Polyposis GASTROESOPHAGEAL REFLUX See also: Intestinal Pseudo-Obstruction Syndrome Gastroesophageal Reflux (GER) Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER) PO Box 1153 Germantown, MD 20875-1153 (301) 601-9541 ??gergroup@aol.com http://www.reflux.org 1,2,3,5,6,8,9 GASTROINTESTINAL CANCER See: Peutz-Jeghers Syndrome; Polyposis GASTROINTESTINAL DISORDERS The Oley Foundation 214 Hun Memorial Albany Medical Center, A-28 Albany, NY 12208-3478 (800) 776-OLEY (6539) (518) 262-5079 (518) 262-5528 (fax) ??iBishopJ@mailamc.edu http://www.oley.org 1,2,3,4,5,6,7,9 GAUCHER DISEASE See also: Tay-Sachs Disease National Gaucher Foundation 11140 Rockville Pike, Ste. 350 Rockville, MD 20852-3106 (800) 925-8885 (301) 816-1515 (301) 816-1516 (fax) ??ngf@gaucherdisease.org http://www.gaucherdisease.org 1,2,3,4,5,6,7,8,9 GENEE-WIEDEMANN SYNDROME See: Nager & Miller Syndromes GENETIC DISORDERS Genetic Alliance 4301 Conneticut Ave. NW, Ste. 404 Washington, DC 20008-2304 (202) 966-5557 (202) 966-8553 (fax) (800) 336-GENE (4363) helpline http://www.geneticalliance.org ??info@geneticalliance.org 1,2,3,4,6,7,9; Spanish materials; rare chromosome abnormalities Association of Genetic Support of Australia, Inc. (AGSA) 66 Albion St, Surry Hills, Australia NSW 2010 (02) 9211 1462, (02) 9211 8077 (fax) ??iagsa@oze.com.au http://www.agsagenetisupport.org 1,2,3,4; annual genetics awareness week; counseling, information, and support Northeast VCFS Support Group 2 Lansing Dr. Salem, NH 03079 (603) 898-6332 (603) 898-0705 (fax) ??MLADJA@aol.com http://www.vcfsef.org 1,2,3,6 GENITALIA, AMBIGUOUS See also: Hermaphroditism Ambiguous Genitalia Support Network (AGSN) PO Box 313 Clements, CA 95227-0313 (209) 727-0313 (voice/fax) ??agsn@jps.net http://www.jps.net/agsn 2,3,4,6,7 GILFORD SYNDROME See: Progeria GINGIVAL FIBROMATOSIS AND HYPERTRICHOSIS See: Ectodermal Dysplasias GIROUX-BARBEAU SYNDROME See: Ichthyosis GLAUCOMA See also: Visual Impairments Glaucoma Research Foundation 200 Pine St. San Francisco, CA 94104 (800) 826-6693 (415) 986-3162 ??info@glaucoma.org http://www.glaucoma.org 1,2,3,4,8; Spanish brochures available. GLUCOSYL CEREBROSIDE LIPIDOSIS See: Gaucher Disease GLUTARIC ACIDURIA, TYPE I See also: Acidemia, Organic; Lactic Acidosis International Organization for Glutaric Aciduria, Type I IOGA Rd #4, Box 299-A Blairsville. PA 15717 (724) 459-0179 ??cswelch@helicon.net http://www.glutaricacidemia.org 2,3,4,6,7,8 GLUTARICACIDURIA I See: Glutaric Aciduria, Type I GLUTARICACIDURIA II See: Acidemia, Organic; Lactic Acidosis GLUTEN INTOLERANCE See also: Celiac Disease; Celiac Sprue Gluten Intolerance Group of North America 15110 Tenth Ave. SW, Ste. A Seattle, WA 98116-1820 (206) 246-6652, (206) 246-6531 (fax) ??info@gluten.net http://www.gluten.net 1,2,3,4,5,6,7,8 GLUTEN-SENSITIVE ENTEROPATHY See: Celiac Disease; Celiac Sprue; Gluten Intolerance GLYCOGEN STORAGE DISEASES Association for Glycogen Storage Disease PO Box 896 Durant, IA 52747 (319) 785-6038 (voice/fax) 1,2,3,4,6,8 GLYCOGENOSES See: Glycogen Storage Diseases GLYCOSPHINGOLIPIDOSES See: Tay-Sachs Disease GOLDENHAR SYNDROME See also: Craniofacial Disorders Goldenhar Syndrome Research & Information Fund PO Box 61643 St. Petersburg, FL 33714 (813) 522-5772 (813) 522-5885 (fax) ??btorman@pbsnet.com http://www.GOLDENHAR.com 2 GOLDENHAR-GORLIN SYNDROME See: Goldenhar Syndrome GOLDFLAM DISEASE See: Myasthenia Gravis GONADAL DYGENESIS (45, X) See: Turner Syndrome GORLIN-CHAUDHRY-MOSS SYNDROME See: Ectodermal Dysplasias GRANULOMA, EOSINOPHILIC See: Histiocytosis GRANULOMATOUS DISEASE, CHRONIC See also: Immune Disorders Chronic Granulomatous Disease Association Inc. c/o Mary Hurley 2616 Monterey Rd. San Marino, CA 91108 (626) 441-4118 ??cgda@socal.rr.com http://home.pacbell.net/cgda/ 1,2,3,4,7,8,9 GRAVES DISEASE See: Thyroid Disorders GROENBLAD-STRANDBERG SYNDROME See: Pseudoxanthoma Elasticum (PXE) GROUP B STREP Group B Strep Association PO Box 16515 Chapel Hill, NC 27516 (919) 932-5344 (919) 932-3657 (fax) http://www.groupbstrep.org 1,2,3,4,7,8,9 GROWTH DISORDERS See also: Dwarfism/Short Stature Human Growth Foundation 997 Glen Cove Ave. Glen Head, NY 11545 (800) 451-6434 (516) 671-4041 (516) 671-4055 (fax) ??hgfi@hyfound.org http://www.hgfound.org 1,2,3,4,5,6,8,9; Spanish materials Little People's Research Fund 80 Sister Pierre Dr. Towson, MD 21204 (800) 232-5773 (410) 494-0055 (410) 494-0062 (fax) ??lprf@lprf.org http://www.lprf.org 1,2,8 MAGIC Foundation 1327 N. Harlem Ave. Oak Park, IL 60302 (800) 362-4423 (708) 383-0808 (fax) (708) 383-0899 ??mary@magicfoundation.org http://www.magicfoundation.org 1,2,3,4,5,6,9;Spanish materials; pen pal program for children GROWTH HORMONE DEFICIENCY See: Growth Disorders GROWTH RETARDATION, INTRAUTERINE See: Growth Disorders GROWTH RETARDATION-ALOPECIA-PSEUDOANODONTIA-OPTIC ATROPHY See: Ectodermal Dysplasias GUERIN-STERN SYNDROME See: Arthrogryposis Multiplex Congenita GUILLAIN-BARRE SYNDROME See also: Autoimmune Disorders Guillain-Barre Syndrome Support Group of Ontario c/o M.D.A.C 2345 Yonge St., Ste. 901 Toronto, ON CAN M4P 2E5 (800) 567-2873 (519) 747-5777 (519) 747-5987 (fax) ??info@brenfile.com 1,5,6,8,9 Guillain-Barre Syndrome Foundation International PO Box 262 Wynnewood, PA 19096 (610) 667-0131 (610) 667-7036 (fax) ??GBINT@ix.netcom.com http://www.webmast.com/gbs/ GUNTHER PORPHYRIA See: Porphyria HADDAD SYNDROME See: Central Hypoventilation Syndrome, Congenital HAILEY-HAILEY DISEASE See: Ichthyosis HAIRY ELBOWS DYSPLASIA See: Ectodermal Dysplasias HALLERMAN-STREIFF SYNDROME See: Craniofacial Disorders; Ectodermal Dysplasias; Short Stature HALLOPEAU-SIEMENS DISEASE See: Epidermolysis Bullosa, Dystrophic HAND-SCHULLER-CHRISTIAN SYNDROME See: Histiocytosis HAND-SHOULDER SYNDROME See: ReflexSympathetic Dystrophy Syndrome HARLEQUIN ICHTHYOSIS See: Ichthyosis HAY-WELLS SYNDROME See: Cleft Palate; Craniofacial Disorders; Deaf-Blind; Ectodermal Dysplasias; Hearing Impairments; Visual Impairments HAYDEN SYNDROME See: Ectodermal Dysplasias HEAD INJURY See: Brain Injury HEARING IMPAIRMENTS Alexander Graham Bell Association for the Deaf and hard of hearing 3417 Volta Pl. NW Washington, DC 20007-2778 (202) 337-5220 (voice/TDD) (202) 337-8314 (fax) ??lquigley@agbell.org http://www.agbell.org 1,2,3,4,5,6,; Spanish materials, scholarship program American Society for Deaf Children PO Box 3355 Gettysburg, PA 17325 (800) 942-2732 (voice/TDD) (717) 334-7922 ??asdc1@aol.com http://www.deafchildren.org 1,2,3,4,5,6,7 American Speech, Language, Hearing Association 10801 Rockville Pike Rockville, MD 20852 (301) 897-5700 (301) 571-0457 (fax) http://www.asha.org 1,2,3,6,7,8,9 Auditory-Verbal International 2121 Eisenhower, Ste. 402 Alexandria, VA 22314 (703) 739-1049 (703) 739-0874 (TDD) (703) 739-0395 (fax) ??audiverb@aol.com http://www.auditory-verbal.org 1,2,3,4,6,7 Better Hearing Institute--U.S. and Canada 515 King Street, Suite 420 Alexandria, VA 22314 (800) 327-9355 (voice/TDD) (703) 684-3391 1,2,4 Cochlear Implant Association, Inc. 5335 Wisconsin Ave. NW Washington, DC 20015 (202) 895-2781 (202) 895-2782 (fax) ??76207.3114@compuserve.com 1,2,3,4,5,6,7 Deafness Research Foundation 1225 1 St., Ste. 500 Washington, DC 20005 (800) 829-5334 (voice/TDD): (202) 289-5850 (voice/TDD): http://www.hearinghealth.org 1,2,4,7,8,9 Gallaudet University Office of Public Relations 800 Florida Ave., NE Washington, DC 20002-3695 (202) 651-5050 (202) 651-5608 (TDD) (202) 651-5704 (fax) ??public.relations@gallaudet.edu http://www.gallaudet.edu HEAR Now 9745 E. Hampden Ave., Ste. 300 Denver, CO 80231-4923 (800) 648-4327 (voice/TDD) (303) 695-7797 (voice/TDD) (303) 695-7789 (fax) ??jostetter@aol.com 1,2,7; accepts tax-deductible donations of used hearing aids John Tracy Clinic for Preschool Deaf Children 806 W. Adams Blvd. Los Angeles, CA 90007 (800) 522-4582 (voice/TDD) (213) 748-5481 (213) 747-2924 (TDD) (213) 749-1651 (fax) ??mmartindale@johntracyclinic.org http://www.johntracyclinic.org 1,2,4 free correspondence course for preschoolers, Spanish materials Lead Line House Ear Institute 2100 W. Third St., 5th Flr. Los Angeles, CA 90057 (800) 352-8888 (voice/TDD) (800) 287-4763 (voice/TDD, Canada only) (213) 484-2642 (213) 483-4431 (fax) ??blincoln@hei.org http://www.hei.org 2,3,4 National Association of the Deaf 814 Thayer Ave., Ste. 250 Silver Spring, MD 20910-4500 (301) 587-1788 (301) 587-1789 (TDD) (301) 587-1791 (fax) ??nadinfo@nwd.org http://www.nad.com 1,2,4,5,6,7; youth program includes Jr NAD clubs and Youth Leadership Camp, National Deaf Education Network and Clearinghouse KDES PAS-6 800 Florida Ave., NE Washington, DC 20002-3695 (202) 651-5051 (202) 651-5052 (TDD) (202) 651-5044 (fax) ??Clearinghouse.Infotogo@gallaudet.edu http://www.clerccenter.gallaudet.edu (SEE) Center for the Advancement of Deaf Children PO Box 1181 Los Alamitos, CA 90720 (562) 430-1467 (voice/TDD) (562) 795-6614 (fax) ??seectr@aol.com http://www.seecenter.org 2,4 SHHH: Self Help for Hard of Hearing People 7910 Woodmont Ave., Ste. 1200 Bethesda, MD 20814 (301) 657-2248 (301) 657-2249 (TDD) (301) 913-9413 (fax) ??National@shhh.org http://www.shhh.org 1,2,4,5,6, Telecommunications for the Deaf, Inc. 8630 Fenton St., Ste. 604 Silver Spring, MD 20910-3803 (301) 589-3786 (301) 589-3006 (TDD) (301) 589-3797 (fax) ??info@tdi-online.org http://www.tdi-online.org 1,2,6,7 The Canadian Hearing Society 271 Spadina Rd. Toronto, ON CAN M5R 2V3 (416) 964-9595 (416) 964-0023 (TDD) (416) 928-2525 (fax) ??info@chs.ca http://www.chs.ca 1,2,3,4,5,6,7 The Learning to Listen Foundation Auditory Verbal Therapy Phillips House North York General Hospital 10 Buchan Ct. Toronto, ON CAN M2J IV2 (416) 491-4648 (416) 491-7215 (fax) ??westabro@nygh.on.ca http://www.nygh.on.ca 1,2,3,4,6; auditory-verbal services for children who are deaf and hard of hearing and their families; professional education National Cued Speech Association (NCSA) 23970 Hermitage Rd. Cleveland, OH 44122-4008 (216) 292-6213 (voice/TDD) (800) 459-3529 (voice/TDD) ??cuedspdisc@aol.com http://www.cuedspeech.org 1,2,3,4,5,6,7 HEART DISORDERS American Heart Association 7272 Greenville Ave. Dallas, TX 75231-4596 (800) 242-8721 (214) 706-1176 (214) 706-2139 (fax) ??inquire@amhrt.org http://www.amhrt.org/ 1,2,4,5,6,7,8,9 Spanish materials CHASER: Congenital Heart Anomalies--Support, Education, & Resources, Inc. 2112 N. Wilkins Rd. Swanton, OH 43558 (419) 825-5575 (419) 825-2880 (fax) ??chaser@compuserve.com ??myer106w@cclc.gov http://www.csun.edu/~hfmth006/chaser http://www.csun.edu/~hfmth006 chaser/chaser-news/html 1,2,3,4,7,9 Children's Heart Association for Support and Education c/o Cardiac Clinic Hosp. for Sick Children Cathy Sikora 555 University Ave. Toronto, ON CAN S5G 1X8 (416) 813-5848 (416) 813-5582 (fax) 1,2,3,4,8,9 H.E.A.R.T.S. Connection Famiy Resource Center 3101 N. Sillect Ave. Ste. 115 Bakersfield, CA 93308 (661) 328-9055 ext. 282 (661) 328-9940 (fax) Kids With Heart National Association for Children's Heart Disorders, Inc. 1578 Careful Dr. Green Bay, WI 54304-2941 (800) 538-5390 (phone/fax-US only) (920) 498-0058 (phone/fax-outside US) ??ikdswhrt@execpc.com http://www.execpc.com/~kdswhrt/ 2,3,4,7,9 HEMANGIOMA See: Craniofacial Disorders HEMIDYSPLASIA, UNILATERAL See: Ichthyosis HEMIFACIAL MICROSOMIA See: Goldenhar Syndrome HEMIHYPERTROPHY See: Beckwith-Wiedeman Syndrome HEMIPLEGIA, ALTERNATING See also: Epilepsy; Seizure Disorders International Foundation for Alternating Hemiplegia of Childhood 239 Nevada St. Redwood City, CA 94062 (650) 365-5798 (phone/fax) ??laegan@aol.com http://www.ahckids.org 1,2,8 HEMISHPERECTOMY See: Rasmussen Syndrome HEMOLYTIC ANEMIA See: Cooley Anemia HEMOLYTIC-UREMIC SYNDROME See: Kidney Disorders HEMOPHAGOCYTIC LYMPHOHISTIOCYTOSIS See: Histiocytosis HEMOPHAGOCYTIC RETICULOSIS See: Histiocytosis HEMOPHILIA National Hemophilia Foundation 116 W.32nd St., 11th Fl. New York, NY 10001-3212 (800) 424-2634 (212) 328-3700 (212) 328-3777 (fax) ??info@hemophilia.org http://www.hemophilia.org 1,2,4,5,6,7,8; Spanish materials World Federation of Hemophilia 1425 Rene Levesque Blvd. W. Ste. 1010 Montreal, QUE CAN H3G 1T7 (514) 933-7944 (514) 933-8916 (fax) http://www.wfh.org ??wfh@wfh.org 1,2,4,6,8; worldwide referrals; guide for travelers HEMORRHAGIC NODULAR PURPURA See: Fabry Disease HEMORRHAGIC TELANGIECTASIA, HEREDITARY (HHT) Hereditary Hemorrhagic Telangiectasia (HHT) Foundation Internation, Inc. PO Box 8087 New Haven, CT 06530 (800) 448-6389 ??hhtinfo@hht.org http://www.hht.org 1,2,3,5,6,8 HEPATIC DUCTULAR HYPOPLASIA, SYNDROMATIC See: Alagille Syndrome HEPATOPHOSPHORYLASE DEFICIENCY GLYCOGENOSIS See: Glycogen Storage Diseases; Muscular Dystrophy HEREDITARY KIDNEY DISEASES See: Kidney Diseases, Hereditary HEREDITARY LEPTOCYTOSIS See: Cooley Anemia HERMANSKY-PUDLAK SYNDROME See also: Albinism & Hypopigmentation; Visual Impairments Hermansky-Pudlak Syndrome Network Inc. 1 South Rd. Oyster Bay, NY 11771 (800) 789-9477 (516) 922-3440 (516) 922-4022 (fax) ??appell@worldnet.att.net http://www.medhelp.org/web/hspn.htm 1,2,3,6,7,9; Includes help for families struggling with Chediak Higashi syndrome HERMAPHRODITISM See also: Genitalia, Ambiguous Intersex Society of North America PO Box 3070 Ann Arbor, MI 48106-3070 (734) 994-7369 (734) 994-7379 (fax) ??info@isna.org http://www.isna.org 1,2,3,6 HERNIA, DIAPHRAGMATIC CHERUBS PO Box 1150 Creedmoor, NC 27522 (919) 693-8158 ??Cherubs@gloryroad http://www.gloryroad.net/~cherubs 1,2,3,4,7,9 HERS DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy HIRSCHSPRUNG DISEASE See: Intestinal Pseudo-Obstruction Syndrome HISTIOCYTOSIS See also: Growth Disorders; Liver Disorders; Lung Diseases; Pituitary Tumors Histiocytosis Association of America 302 N. Broadway Pitman, NJ 08071 (800) 548-2758 (US and Canada) (856) 589-6606 (856) 589-6614 (fax) ??histiocyte@aol.com http://www.histio.org 1,2,3,4,6,8,9; Spanish materials HIV See: AIDS HODGKIN DISEASE See: Leukemia HOLOPROSENCEPHALY See also: Brain Stem Malformations; Chromosomal Abnormalities; Craniofacial Disorders The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations c/o Dr. Nancy Clegg Texas Scottish Rite Hospital for Children, Dept. of Neurology 2222 Welborn St. Dallas, TX 75219 (800) 421-1121 ext. 8411 (214) 559-8411 (214) 559-7835 (fax) ??nclegg@tsrh.org http://hpe.stanford.edu 1,2,3,4,6,7,8,9 HUMAN IMMUNODEFICIENCY VIRUS See: AIDS HUNTER SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease HURLER SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease HURLER/SCHEIE SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease HUTCHINSON-GILFORD SYNDROME See: Progeria HUTCHINSON-WEBER-PEUTZ SYNDROME See: Peutz-Jeghers Syndrome; Polyposis HYDROCEPHALUS Hydrocephalus Association 870 Market St., Ste. 705 San Francisco, CA 94102 (415) 732-7040 (415) 732-7044 (fax) ??hydroassoc@aol.com http://www.neurosurgery.mgh. harvard.edu/ha/ 1,2,3,4,6,7; Spanish materials Hydrocephalus Support Group, Inc. PO Box 4236 Chesterfield, MO 63006-4236 (636) 532-8228 (636) 995-4108 (fax) ??hydrobuff@postnet.com 1,2,3,4,5,6 National Hydrocephalus Foundation 12413 Centralia Rd. Lakewood, CA 90715-1623 (888) 260-1789 (msg. center) (562) 402-3523 (562) 924-6666 (fax) ??hydrobrat@earthlink.net http://www.geocities.com/ HotSprings/villa/2300 1,2,3,4,5,7; videos and cassettes available HYDROCEPHALUS, OBSTRUCTIVE See: Dandy-Walker Syndrome HYPERAMMONEMIA See: Urea Cycle Disorders HYPERCALCEMIA SYNDROME, INFANTILE, IDIOPATHIC See: Williams Syndrome HYPERCALCEMIA-SUPRAVALVAR AORTIC STENOSIS See: Williams Syndrome HYPERCYSTINURIA See: Cystinuria HYPERGLYCINEMIA WITH KETOACIDOSIS AND LEUKOPENIA See: Acidemia, Organic HYPERLEXIA See: Autism; Language Disorders Canadian Hyperlexia Association 300 John St. PO Box 87673 Thornhill, ON CAN L3T 7R3 (905) 886-8364 (905) 886-4624 (fax) ??cha@ican.net http://www.home.ican-net/~cha 1,2,3,5,6,9 American Hyperlexia Association 195 W. Spangler, Ste. B Elmhurst IL. 60126 (630) 415-2212 (630) 530-5909 (fax) ??webmaster@hyperlexia.org http://www.hyperlexia.org 1,3,6 HYPERLIPODEMA See: Autoimmune Disorders HYPEROXALURIA See: Oxalosis & Hyperoxaluria HYPERTELORISM/ HYPOSPADIUS SYNDROMES See: Opitz Syndrome HYPERTHERMIA OF ANESTHESIA See: Malignant Hyperthermia HYPERTHYROID MYOPATHY See: Muscular Dystrophy; Thyroid Disorder HYPERURICEMIA-CHOREOATH ETOSIS-SELF-MUTILATION SYNDROME See: Lesch-Nyhan Disease HYPERURICEMIA, HEREDITARY See: Lesch-Nyhan Disease HYPODONTIA AND NAIL DYSGENESIS See: Ectodermal Dysplasias HYPOERYTHEMIA, PROGRESSIVE See: Anemia, Aplastic HYPOGAMMAGLOBULINEMIA See: Immune Disorders HYPOMELANOSIS OF ITO See: Ectodermal Dysplasias; Epilepsy; Incontinentia Pigmenti; Vitiligo HYPOMYELINATION See: Myelin Disorders HYPOPARATHYROIDISM See also: Thyroid Disorders Hypoparathyroidism Association, Inc. 2835 Salmon St. Idaho Fall, ID 83406 (208) 524-3857 (208) 524-2619 (fax) http://www.FP1.cyberhighway. net/~hpthnews/ 1,2,3 HYPOPIGMENTATION See: Albinism & Hypopigmentation; Vitiligo HYPOPLASIA OF THE CORPUS CALLOSUM See: Agenesis of the Corpus Callosum HYPOPLASTIC ANEMIA See: Anemia, Aplastic HYPOPLASTIC LEFT HEART SYNDROME See: Heart Disorders HYPOSPADIUS/HYPERTELORIS M SYNDROMES See: Opitz Syndrome HYPOTHYROID MYOPATHY See: Muscular Dystrophy; Thyroid Disorders HYPOTHYROIDISM, CONGENITAL See: Growth Disorders; Thyroid Disorders HYPOTONIA, BENIGN CONGENITAL See: Spinal Muscular Atrophy I-CELL DISEASE See: Mucopolysaccharidosis; Tay-Sachs Disease ICHTHYOSIFORM ERYTHRODERMA-DEAFNESS-KERATITIS See: Ectodermal Dysplasias ICHTHYOSIS FIRST: Foundation for Ichthyosis and Related Skin Types 650 N. Cannon Ave., Ste. 17 Lansdale, PA 19446 (800) 545-3286 (215) 631-1411 (215) 631-1413 (fax) ??info@scalyskin.org http://www.scalyskin.org 1,2,3,4,6,7,8,9; Spanish materials IDIOPATHIC THROMBOCYTOPENIA PURPURA (ITP) See: Purpura, Idiopathic Thrombocytopenia (ITP) IDIOSYNCRATIC PORPHYRIA See: Porphyria ILEOSTOMY See: Ostomy ILLNESS, TERMINAL Children's Hospice International 2202 Mt. Vernon Ave., Ste. 3C Alexandria, VA 22301 (800) 2-4-CHILD (242-4453) (703) 684-0330 (703) 684-0226 (fax) ??chiorg@aol.com http://www.chionline.org 1,2,4,6,7 IMMUNE DEFICIENCY See: Immune Disorders IMMUNE DISORDERS See also: Autoimmune Disorders Immune Deficiency Foundation 25 W. Chesapeake Ave., Ste. 206 Towson, MD 21204 (800) 296-4433 (410) 321-6647 (410) 321-9165 (fax) ??idf@clark.net http://www.primaryimmune.org 1,2,4,5,6,7,8,9; Spanish materials IMPERFORATE ANUS See: Anorectal Malformations INCLUSION BODY MYOSTISIS See: Immune Disorders INCONTINENCE National Association For Continence PO Box 8310 Spartanburg, SC 29305 (800) 252-3337 (864) 579-7900 (864) 579-7902 (fax) ??lloudon@nafc.org http://www.nafc.org 1,2,7; Spanish materials Simon Foundation for Continence PO Box 815 Wilmette, IL 60091 (800) 237-4666 (847) 864-3913 (847) 864-9758 (fax) ??simoninfo@simonfoundation.org http://www.simonfoundation.org 1,2,4,5,6,7; French and Spanish material INCONTINENTIA PIGMENTI See also: Ectodermal Dysplasias National Incontinentia Pigmenti Foundation 30 E. 72th St., 16th Fl. New York, NY 10021 (212) 452-1231 (212) 452-1406 (fax) ??nipf@pipeline.com http://imgen.bcm.tmc.edu/nipf 5,6; Informational materials in 11 different languages, including English, Spanish, French, Italian, Russian, Portuguese, Chinese, Japanese, and others. INCONTINENTIA PIGMENTI ACHROMIANS See: Ectodermal Dysplasias; Epilepsy; Incontinentia Pigmenti INDIA RUBBER SKIN See: Ehlers-Danlos Syndrome INFANTILE FACIO-SCAPULO-HUMERAL MUSCULAR DYSTROPHY See: Facio-Scapulo-Humeral Muscular Dystrophy INFANTILE HYPERCALCEMIA SYNDROME, IDIOPATHIC See: Williams Syndrome INFANTILE SPASMS See: Epilepsy INTESTINAL NEURONAL DYSPLASIA See: Intestinal Pseudo-Obstruction Syndrome INTESTINAL POLYPOSIS See: Peutz-Jeghers Syndrome; Polyposis INTESTINAL POLYPOSIS-CUTANEOUS PIGMENTATION SYNDROME See: Peutz-Jeghers Syndrome; Polyposis INTESTINAL PSEUDO-OBSTRUCTION SYNDROME American Pseudo-Obstruction & Hirschsprung's Disease Society 158 Pleasant St. North Andover, MA 01845 (800) 394-2747 (978) 685-4477 (978) 685-4488 (fax) ??aphs@tiac.net http://www.tiac.net/users/aphs 1,2,3,4,6,8,9 Association of Gastrointestinal Motility Disorders, Inc. AGMD International Corporate Hdqtrs. 11 North St. Lexington, MA 02420 (781) 861-3874 (781) 861-7834 (fax) ??AGMDInc@aol.com INTRAHEPATIC BILE DUCT PAUCITY See: Alagille Syndrome INTRAUTERINE GROWTH RETARDATION See: Growth Disorders ISOVALERIC ACIDEMIA (IVA) See: Acidemia, Organic ISOVALERYL-COA CARBOXYLASE DEFICIENCY See: Acidemia, Organic JANSKY-BIEL SCHOWSKY DISEASE See: Batten Disease; Tay-Sachs Disease JEGHERS SYNDROME See: Peutz-Jeghers Syndrome; Polyposis JERVELL & LANGE-NIELSEN SYNDROME See: Hearing Impairments; Long Q-T Syndrome JEUNE SYNDROME See: Growth Disorders JOHANSON-BLIZZARD SYNDROME See: Craniofacial Disorders; Ectodermal Dysplasias; Growth Disorders; Hearing Impairments; Short Stature JORGENSON SYNDROME See: Ectodermal Dysplasias JOUBERT SYNDROME See also: Apnea, Sleep Joubert Syndrome Foundation 12348 Summer Meadow Rd. Rock, MI 49880-9552 (906) 359-4707 (906) 359-4205 (fax) ??joubert@portup.com http://www.joubertfoundation.com 1,2,3,4,5,6,9 JUVENILE GOUT-CHOREOATHETOSIS-MENTAL RETARDATION SYNDROME See: Lesch-Nyhan Disease KALLMAN SYNDROME See: Cleft Palate; Growth Disorders; Hearing Impairments; Kidney Disorders KAST SYNDROME See: Cancer; Oilier Disease KEARNS-SAYRE SYNDROME See: Heart Disorders; Mitochondrial Disorders; Retinitis Pigmentosa; Visual Impairments KERATITIS FOLLICULARIS SPINULOSA DECALVANS See: Ectodermal Dysplasias; Ichthyosis KERATITIS-ICHTHYOSIS-DEAFNESS (KID) SYNDROME See: Ectodermal Dysplasias; Ichthyosis; Hearing Impairments KETOACIDURIA See: Maple Syrup Urine Disease KETOTIC HYPERGLYCINEMIA See: Acidemia, Organic KID SYNDROME See: Ectodermal Dysplasias; Ichthyosis; Hearing Impairments KIDNEY DISEASES, HEREDITARY See also: Cystinosis; Kidney Disorders, Hereditary; Oxalosis & Hyperoxaluria Hereditary Nephritis Foundation 1390 W. 6690 S., #202H Murray, UT 84123 (801) 262-5901 (phone/fax) http://www.cc.utah.edu/~cla620 2/HNF.htm 1,3,4 KIDNEY DISORDERS See also: Cystinosis; Kidney Diseases, Hereditary; Oxalosis & Hyperoxaluria American Association of Kidney Patients 100 S. Ashley Dr., Ste. 280 Tampa, FL 33602 (800) 749-2257 (813) 223-7099 (813) 223-0001 (fax) ??aakpnat@aol.com http://www.aakp.org 1,2,4,6,7,8 American Kidney Fund 6110 Executive Blvd., Ste. 1010 Rockville, MD 20852 (800) 638-8299 (301) 881-3052 (301) 881-0898 (fax) ??helpline@akfinc.org http://www.arbon.com/kidney 1,2,6,8; Spanish materials, financial assistance for treatment-related expenses Child & Youth Clinical Trials Network (CYCTN) Cheo-Research Institute 401 Smith Rd. Ottawa, ON CAN K1H 8L1 (613) 737-4098 (613) 738-4800 (fax) http://www.cpkdrc.org 2,4 Kidney Foundation of Canada 300-5165 Sherbrooke St. W. Montreal, PQ CAN H4A IT6 (514) 369-4806 (514) 369-2472 (fax) ??kathleen@kidney.ca http://www.kidney.ca 2,3,4,5,8; French/Chinese/Punjabi materials National Kidney Foundation 30 E. 33rd St., 11th Fl. New York, NY 10016 (800) 622-9010 (212) 889-2210 (212) 779-0068 (fax) http://www.kidney.org 1,2,4,5,6,7,8 Polycystic Kidney Research Foundation 4901 Main St., Ste. 200 Kansas City, MO 64112-2634 (800) 753-2873 (816) 931-2600 (816) 931-8655 (fax) ??pkdcure@pkfoundation.org http://wwwpkdcure.org 1,2,5,6,7,8 Spanish/French/German/ Italian/Japanese materials KIDNEY STONES See: Cystinuria KINKY HAIR DISEASE See: Menkes Disease KIRGHIZIAN DERMATOOSTEOLYSIS See: Ectodermal Dysplasias KLINEFELTER'S SYNDROME 49 XXXXY Syndrome Association 10001 NE 74th St. Vancouver, WA 98662-3801 (360) 892-7547 ??kimbj@juno.com 1,3 Klinefelter's Syndrome Association, Inc. PO Box 119 Roseville, CA 95661-0119 (916) 773-2999 ??ks47xxy@ix.netcom.com http://www.genetic.org 1,2,3,4,5,6,7,9; Spanish materials Klinefelter's Syndrome Association of America N5879 30th Rd. Pine River, WI 54965 (920) 987-5782 1,2,3,5 KLIPPEL-TRENAUNAY SYNDROME See also: Nevi, Giant Congenital; Sturge-Weber Syndrome; Klippel-Trenaunay Support Group c/o Judy Vessey 5404 Dundee Rd. Edina, MN 55436 (612) 925-2596 (612) 925-4708 (fax) http://www.k-t.org ??jvessey@uswest.net 1,2,3,4,6,9 KLIPPEL-TRENAUNAY-WEBER SYNDROME See: Klippel-Trenaunay Syndrome KRABBE DISEASE See: Leukodystrophy, Tay-Sachs Disease KUFS DISEASE See: Batten Disease; Tay-Sachs Disease KUGELBERG-WELANDER DISEASE See: Spinal Muscular Atrophy KUSSMAUL-LANDRY PARAYLSIS See: Guillain-Barre Syndrome KYPHOSIS See: Scoliosis LACTATE DEHYDROGENASE DEFICIENCY See: Muscular Dystrophy LACTIC ACIDOSIS See also: Glutaric Aciduria, Type I; Metabolic Disorders Lactic Acidosis Support Group 1620 Mable Ave. Denver, CO 80229 (303) 287-4953 2,3,4,9 LAMBERT-EATON SYNDROME See: Muscular Dystrophy LANDOUZY-DEJERINE MUSCULAR DYSTROPHY See: Facio-Scapulo-Humeral Muscular Dystrophy LANDRY ASCENDING PARAYLSIS See: Guillain-Barre Syndrome LANGER-GIEDION SYNDROME See: Ectodermal Dysplasias; Exostoses, Multiple Hereditary LANGERHANS CELL HISTIOCYTOSIS See: Histiocytosis; Language Disorders LATEX ALLERGY Latex Allergy Information Service 176 Roosevelt Ave. Torrington, CT 06790 (860) 482-6869 (860) 482-2294 (fax) ??debilan1@cs.com http://www.latexallergyhelp. com 1,2,4,6 LAURENCE-MOON SYNDROME See: Laurence-Moon-Bardet-Biedl Syndrome LAURENCE-MOON-BARDET-BIEDL SYNDROME (LMBBS) See also: Kidney Disorders; Retinitis Pigmentosa Laurence-Moon-Bardet-Biedl Syndrome Network (LMBBS) Executive Plaza 1 11350 McComick Rd., Ste. 800 Hunt Valley, MD 21031 (888) 683-5555 (toll free) (800) 683-5551 (TDD) (410) 785-1414 (410) 771-9470 (fax) Attention: Ridia Anderson ??mmarzullo@blindness.org http://www.blindness.org 1,2,3 LE JEUNE SYNDROME See: Cri Du Chat Syndrome LEARNING DISABILITIES See also: Attention Deficit Disorder; Dyslexia Learning Disabilities Association of America 4156 Library Rd. Pittsburgh, PA 15234 (412) 341-1515 (412) 344-0224 (fax) ??ldanatl@usaor.net http://www.ldanatl.org 1,2,4,5,7; Spanish materials Learning Disabilities Association of Canada 323 Chapel St., Ste. 200 Ottawa, ON CAN K1N 7Z2 (613) 238-5721 (613) 235-5391 (fax) ??information@ldac-taac.ca http://www.ldac-taac.ca 1,2,4,5,6,7,8; French materials Learning Disabilities Association of New York 27 West 20th St., Ste. 303 New York, NY 10011 (212) 645-6730 (212) 924-8896 (fax) National Center for Learning Disabilities 381 Park Ave. S, Ste. 1401 New York, NY 10016 (888)575-7373 (212) 545-7510 (212) 545-9665 (fax) http://www.ncld.org 1,2,4,7 Parents of Gifted/LD Students 2420 Eccleston St. Silver Spring, MD 20902-4925 (301) 986-1422 (301) 681-4884 (fax) ??jilmeyers@aol.com http://www.geocities.com/athens /1105/gtld.htm 1,2,3,4,5 Resource for Children with Special Needs, Inc. 200 Park Ave. S., Ste. 816 New York, NY 10003 (212) 677-4650 (212) 254-4070 (fax) ??info@resourcesnyc.org http://resourcesnyc.org 2,4 LEIGH'S DISEASE See: Lactic Acidosis; Mitochondrial Disorders LENZ-PASSARGE DYSPLASIA See: Ectodermal Dysplasias LEPTOCYTOSIS, HEREDITARY See: Cooley Anemia LEPTOMENINGEAL ANGIOMATOSIS See: Sturge-Weber Syndrome LESCH-NYHAN DISEASE International Lesch-Nyhan Disease Association 11042 Ferndale St. Philadelphia, PA 19116 (215) 677-4206 2,3 International Lesch-Nyhan Disease Registry Matheny School and Hospital Institute of Applied Research PO Box 339 Peapack, NJ 07977 (908) 234-0618 (908) 234-0963 (fax) ??info@matheny.org http://www.matheny.org 2,3,9 Lesch-Nyhan Registry Dept. of Psychiatry New York Univ., School of Medicine 550 First Ave. New York, NY 10016 (212) 263-6458 (212) 629-9523 (fax) ??andersnl@is2.nyu.edu LETTERER-SIWE DISEASE See: Histiocytosis LEUKEMIA See also: Bone Marrow Transplant; Cancer Leukemia Research Fund of Canada Attn: Patrick Thomson 1110 Finch Ave. W., Ste. 220 Toronto, ON CAN M3J 2T2 (800) 268-2144 (Canada only) (416) 661-9541 (416) 661-7799 (fax) ??leukemia@istar.ca http://www.leukemia.ca 1,2,5,6,8 Leukemia & Lymphoma Society 1311 Mamaroneck Ave., 3rd Fl. White Plains, NY 10605 (800) 955-4572 (212) 573-8484 (212) 450-8844 (212) 856-9686 (fax) http://www.leukemia.org 1,2,3,4,5,7,8; Spanish materials, LEUKODYSTROPHY See also: Myelin Disorders, Tay-Sachs Disease United Leukodystrophy Foundation 2304 Highland Dr. Sycamore, IL 60178 (800) 728-5483 (815) 895-3211 (815) 895-2432 (fax) ??ulf@ceet.niu.edu http://www.ulf.org 1,2,3,4,6,8; Spanish/French materials LEUKODYSTROPHY, METACHROMATIC See: Leukodystrophy, Tay-Sachs Disease LIMB DISORDERS See also: Amputation Superkids: A Newsletter for Families and Friends of Children with Limb Differences 60 Clyde St. Newton, MA 02460-2250 http://www.superkids.org 1 LIMB-GIRDLE MUSCULAR DYSTROPHY See: Muscular Dystrophy LIMIT DEXTRINOSIS See: Glycogen Storage Diseases; Muscular Dystrophy LIPID HISTIOCYTOSIS See: Niemann-Pick Disease, LIPIDOSIS, CEREBROSIDE See: Gaucher Disease LIPOFUSCINOSES, NEURONAL CEROID See: Batten Disease LIPOID HYPERPLASIA, CONGENITAL See: Adrenal Disorders LIPOMYELOMENINGOCELE Lipomyelomeningocele Family Support Network 321 Hopewell St. Birdsboro, PA 19508 (610)582-5937 http://www.home.ptd.net/~ifsn ??gmcafee@ptd.net LISSENCEPHALY See also: Epilepsy Lissencephaly Network, Inc. 10408 Bitterroot Ct. Fort Wayne, IN 46804 (219) 432-4310 (voice/fax) ??lta1@is2.nyu.edu http://www.lissencephaly.org 1,2,3,4,9 The Lissencephally Network, Inc.--Canada Division 1549 Regent St. Regina, SK CAN S4N 1S1 (219) 432-4310 http://www.lissencephaly.org 1,2,3,4,6,8,9; toy-lending library LIVER DISEASE AND TRANSPLANT (PEDIATRICS) See also: Liver Disorders Children's Liver Alliance (formerly the Biliary Atresia & Liver Transplant Network BALT) 3835 Richmond Ave., Box 190 Staten Island, NY 10312-3828 (718) 987-6200 (voice/fax) ??Livers4Kids@earthlink.net http://www.livertx.org 1,2,3,4,5,6,7,9; Spanish materials LIVER DISORDERS American Liver Foundation 75 Maiden Ln., Ste. 603 New York, NY 10038-4810 (800) 223-0179, (800) GO-LIVER, (888)4-HEP-ABC, (212) 668-1000, (212) 668-2000 (fax) ??webmail@liverfoundation.org http://www.liverfoundation.org 1,2,4,5,7,8,9; Spanish materials Canadian Liver Foundation 2235 Sheppard Ave. E., Ste. 1500 Toronto, ON CAN M2J 585 (800) 563-5483 (Canada only) (416) 491-3353 (416) 491-4952 (fax) ??clf@liver.ca http://www.liver.ca 1,2,3,4,5,8; French materials LIVER PHOSPHORYLASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy LOBSTEIN DISEASE, TYPE I See: Osteogenesis Imperfecta LONG QT SYNDROME See also: Heart Disorders International Long QT Syndrome Registry PO Box 653 University of Rochester Medical Ctr. Rochester, NY 14642-8653 (716) 275-5391 (716) 473-2751 (fax) 4,9 Sudden Arrhythmia Death Syndromes (SADS) Foundation 508 E. South Temple, Ste. 20 Salt Lake City, UT 84102 (800) 786-7723 (801) 531-0945 (fax) ??sads@aros.net http://www.sads.org 1,2,3,4,6,8,9; Spanish materials LORDOSIS See: Scoliosis LOWE SYNDROME See also: Arthritis; Cystinuria, Glaucoma; Growth Disorders; Kidney Disorders; Metabolic Disorders; Visual Impairments Lowe Syndrome Association 222 Lincoln St. W. Lafayette, IN 47906 (765)743-3634 ??info@lowesyndrome.org http://www.lowesyndrome.org 1,2,3,6,8,9 LOWE-BICKEL SYNDROME See: Lowe Syndrome LOWE-TERRY-MACHLACHLAN SYNDROME See: Lowe Syndrome LUNG DISEASES American Lung Association 1740 Broadway, 14th Fl. New York, NY 10019 (800) LUNG-USA (212) 315-8700 (212) 265-5642 (fax) (212) 315-8872 (fax) ??info@lungusa.org http://www.lung.usa.org 2,4,5,6,7,8; Spanish materials Canadian Lung Association Attn: Deirdre Freiheit 1900 City Park Dr., Ste. 508 Gloucester, ON CAN K1J 1A3 (613) 747-6776 (613) 747-7430 (fax) ??info@lung.ca http://www.lung.ca 2,4,5,6,7 LUPUS ERYTHEMATOSIS Lupus Foundation of America 1300 Piccard Dr., Ste. 200 Rockville, MD 20850 (800) 588-0121 (888) 385-8787 (301) 670-9292 (301) 670-9486 (fax) ??lupusinfo@aol.com http://www.lupus.org 1,2,5,7.8 Spanish materials SLE Foundation 149 Madison Ave., Ste. 205 New York, NY 10016 (212) 685-4118 (212) 545-1843 (fax) ??lupus@lupusny.org http://www.lupusny.org 1,2,3,4,5,6,7,8; Spanish materials Lupus Canada PO Box 64034 5512 4 St., NW Calgary, AB CAN T2K 6J1 (800) 661-1468, (403) 274-5599 (phone & fax) ??lupuscan@cadvision.com http://www.lupuscanada.org 2,4,5,6,7,8; French materials LYME DISEASE American Lyme Disease Foundation, Inc. Mill Pond Offices. 293 Rte. 100 Somers, NY 10589 (914) 277-6970 (914) 277-6974 (fax) ??inquire@aldf.com http://www.aldf.com 1,2,4,6,8.9 Lyme Disease Foundation 1 Financial Plaza, Gold Bldg., 18th Fl. Hartford, CT 06103-2610 (800) 886-5953 (info line) (860) 525-2000 (860) 525-8425 (voice/fax) ??lymefnd@aol.com http://www.lyme.org 1,2,4,6,7; Spanish materials; May of 2000, in London. Lyme Disease Resource Center PO Box 1423 Ukiah, CA 95482 (707) 468-8460 ??pcm@pacific.net 1,2,4,6,7 LYMPHANGIOMA AboutFace International 123 Edwards St. Ste 1003 Toronto, ON CAN M5G1E2 (800) 665-3223 (416) 597-2229 (416) 944-2488 (fax) ??abtface@interlog.com http://www.interlog.com/abtface 1,2,3,4,5,6,7 LYMPHEDEMA National Lymphedema Network Latham Square 1611 Telegraph Ave., Ste. 1111 Oakland, CA 94612-2138 (800) 541-3259 (510) 208-3110 (fax) ??inln@lymphnet.org http://www.lymphnet.org 1,2,6,7,9 LYMPHOHISTIOCYTOSIS, FAMILIAL ERYTHROPHAGOCYTIC See: Histiocytosis LYMPHOHISTIOCYTOSIS, HEMOPHAGOCYTIC See: Histiocytosis LYMPHOHISTIOCYTOSIS, MALIGNANT See: Cancer; Histiocytosis LYMPHOMA See: Leukemia MACULAR DISEASES See also: Retinitis Pigmentosa; Usher Syndrome; Visual Impairments Association for Macular Diseases 210 E. 64th St. New York, NY 10021 (212) 605-3719 (212) 605-3795 (fax) http://www.macula@macula.org ??macula@macula.org 1,2,4 Macular Degeneration Foundation PO Box 9752 San Jose, CA 95157 (888) 633-3937 (408) 260-1335 (408) 260-1336 ??eyesight@eyesight.org http://www.eyesight.org 1,2,4,9 Stargardt Macular Dystrophy and Other Juvenile Macular Dystrophies Self Help Network c/o Macular Degeration International 6700 N. Oracle Rd., Ste. 505 Tucson, AZ 85704 (800) 393-7634 (520) 797-2525 (520) 797-8018 (fax) ??info@maculardegeneration.org http://www.maculardegeneration. org MACULAR DYSTROPHIES, JUVENILE See: Macular Diseases MAFFUCCI SYNDROME See: Cancer; Ollier Disease MALE SEX CHROMOSOME DISORDERS See Klinefelter Syndrome MALIGNANT HYPERTHERMIA Malignant Hyperthermia Association 200 Elizabeth St. CCRW, Rm. 2-834 Toronto, ON CAN M5G 2C4 (416) 340-3238 (416) 340-4960 (fax) ??mha@mhassn.com http://www.mhassn.com 1,2 Malignant Hyperthermia Association of the United States 39 East State St. PO Box 1069 Sherburne, NY 13460 (800) 986-4287, (607) 674-7901, (800) 674-7910 (fax) ??mhaus@norwich.net http://www.mhaus.org 1,2,9; Spanish/Italian materials MANDIBULOFACIAL DYSOSTOSIS See: Nager & Miller Syndromes; Treacher Collins Syndrome MANNOSIDOSIS See: Tay-Sachs Disease MAPLE SYRUP URINE DISEASE See also: Acidemia, Organic; Metabolic Disorders Maple Syrup Urine Disease Family Support Group 5720 Buckfield Ct. Fort Wayne, IN 46804 (219) 436-0137 1,2,3,6,9; parent-professional network MARDEN-WALKER SYNDROME See: Cleft Palate; Connective Tissue Disorders; Growth Disorders MARFAN SYNDROME See also: Connective Tissue Disorders; Heart Disorders; Scoliosis Canadian Marfan Association Centre Plaza Postal Outlet 128 Queen St., S. PO Box 42257 Mississauga, ON L5M 4Z0 (905) 826-3223 (905) 826-2125 (fax) ??info@marfan.ca http://www.marfan.ca 1,2,3,4,5,6,8,9 National Marfan Foundation 382 Main St. Port Washington, NY 11050-3121 (800) 8MARFAN [862-7326] (516) 883-8712 (516) 883-8040 (fax) ??staff@marfan.org http://www.marfan.org 1,2,3,4,5,6,7,8 MARKER X SYNDROME See: Fragile X Syndrome MARTEAUX-LAMY SYNDROME See: Mucopolysaccharidosis: Tay-Sachs Disease MARSHALL SYNDROME, TYPE I See: Ectodermal Dysplasia MARTIN-BELL SYNDROME See: Fragile X Syndrome MAST CELL DISEASE, SYSTEMIC Mastocytosis Society 433 E. 300 S. Spanish Fork, UT 84660-2147 (801) 798-2032 (801) 794-2980 (fax) ??cybermom@uswest.net http://www.mastocytosis.com 1,2,5,6 MCARDLE DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy MCCUNE-ALBRIGHT SYNDROME See also: Growth Disorders MAGIC Foundation McCune-Albright Syndrome Division 1327 N. Harlem Ave. Oak Park, IL 60302 (800) 362-4423 (708) 383-0808 (fax) (708) 383-0899 ??mary@magicfoundation.org http://www.magicfoundation.org 1,2,3,4,5,6,9; Spanish materials, pen pal program for children MEDITERRANEAN ANEMIA See: Cooley Anemia MEDIUM-CHAIN ACYL-COA DEHYDROGENASE DEFICIENCY (MCAD) See: Fatty Oxidation Disorder MEDULLOBLASTOMA, HEREDITARY See: Brain Tumors MEERKEREN-EHLERS-DANLOS SYNDROME See: Ehlers-Danlos Syndrome MEIGE DISEASE See: Lymphedema MELANOLEUCODERMA ECTODERMAL DYSPLASIAS See: Peutz-Jeghers Syndrome; Polyposis MELAS SYNDROME See: Growth Disorders, Lactic Acidosis, Mitochondrial Disorders MELNICK NEEDLES SYNDROME See: Growth Disorders MEN SYNDROME I See: Multiple Endocrine Neoplasia I MENIERE'S SYNDROME See: Balance Disorders & Dizziness MENINGEAL CAPILLARY ANGIOMATOSIS See: Sturge-Weber Syndrome MENKES DISEASE See also: Liver Disorders; Metabolic Disorders Corporation for Menkes Disease 5720 Buckfield Ct. Fort Wayne, IN 46804 (219) 436-0137 (phone/fax) 1,2,3,6,9; Parent-professional network. MENTAL ILLNESS See also: Mental Retardation/Mental Illness Canadian Mental Health Association 2160 Yonge St. Toronto, ON CAN M4S 2Z3 (416) 484-7750 (416) 484-4617 (fax) ??cmhanat@interlog.com http://www.cmha.ca 1,2; French materials Federation of Families for Children's Mental Health 1101 King St., Ste. 420 Alexandria, VA 22314 (703) 684-7710 (703) 836-1040 (fax) ??ffcmh@ffcmh.org http://www.ffcmh.org 1,2,3,4,5,6,7; Spanish materials, National Alliance for the Mentally III Colonial Place Three 2107 Wilson Blvd., Ste. 300 Arlington, VA 22201 (703) 524-7600 (703) 524-9094 (fax) ??NAMIOFFC@aol.com http://www.nami.org 1,2,4,5,6,7 National Mental Health Association 1021 Prince St, Alexandria, VA 22314-2971 (800) 969-6642 (703) 683-9226 ??infoctr@nmha.org http://www.nmha.org 1,2,4,5,6,7 National Mental Health Services Knowledge Exchange Network (KEN) PO Box 42490 Washington, DC 20015 (800) 789-2647 (301) 984-8796 (fax) ??ken@mentalhealth.org http://www.mentalhealth.org MENTAL RETARDATION See also: Mental Illness; Mental Retardation/Mental Illness The Arc of the United States 1010 Wayne Ave., Ste. 650 Silver Spring, MD 20910 (800) 433-5255 (301) 565-3842 (301) 565-3843 (fax) ??info@thearc.org http://www.TheArc.org/ 1,2,4,5,6,7,8; Spanish materials. Bethphage Developmental Disabilities 2245 Midway Rd., Ste. 300 Carrolton, TX 75006 (972) 866-9989 (972) 991-0834 ??donahue@bethphage.org http://www.bethphage.org 1,2,4 Bethphage The Lind Center, Ste. A. 4980 S 118th St. Omaha, NE 68137-2220 (402) 896-3884 (402) 896-1511 (fax) ??mburke@bethphage.org http://www.bethphage.org 1,2,4; children and adult family services; adult foster care Canadian Association for Community Living & The Roeher Institute 4700 Keele St. Kinsman Bldg., York University North York, ON CAN M3J 1P3 (416) 661-9611 (416) 661-2023 (TDD) (416) 661-5701 (fax) ??info@roeher.ca ??info@cacl.ca.roeher.ca http://www.cacl.ca 1,2,3,4,5,6,7,8,9; French materials People First International PO Box 12642 Salem, OR 97309 (503) 362-0336 (503) 587-8459 (fax) ??heathd@open.org http://www.people1.org 1,2,4,6,8; leadership/self-advocacy training Voice of the Retarded 5005 Newport Dr., Ste. 108 Rolling Meadows, IL 60008 (847) 253-6020 (847) 253-6054 (fax) ??vor@compuserve.com http://www.vor.net 1,2,3,4,5,6,7 MENTAL RETARDATION/MENTAL ILLNESS See also: Mental Illness; Mental Retardation (AAMR) American Association on Mental Resources 444 N Capitol St., Ste. 846 Washington, DC 20001 (800) 424-3688 (202) 387-1968 (202)387-2193 (fax) ??aamr@access.digex.net http://www.aamr.org 1,2,4,5,6 Developmental Disabilities Nurses Association (DDNA) 228 Grimes St., Ste. 246 Eugene, OR 97402 (800) 888-6733 (541) 485-7372 (fax) ??ddnahq@aol.com http://www.ddna.org 1,2,4,5,6,8 National Association of the Dually Diagnosed (NADD) 132 Fair St. Kingston, NY 12401 (800) 331-5362 (845) 331-4336 (846) 331-4569 (fax) ??thenadd@aol.com http://www.thenadd.org 1,2,3,4,5,6,7 MERRF SYNDROME See: Myoclonus; Mitochondrial Disorders METABOLIC DISORDERS See also: Acidemia, Organic; Galactosemia; Lactic Acidosis; Maple Syrup Urine Disease; Niemann-Pick Disease; Phenylketonuria (PKU) Metabolic Information Network PO Box 670847 Dallas, TX 75367-0847 (800) 945-2188 (USA/Canada) (214) 696-2188 (800) 955-3258 (fax, USA/Canada) (214) 696-3258 (fax) ??mizesg@ix.netcom.com 1,9 Climb The Quadrangle Crewe Hall Weston Road, Crewe Cheshire, UK CW1 6UR (44) 1270 250221 (44) 1270 259375 (44) 1270 250244 (fax) ??chris.owenroberts@zoom.co.uk 1,2,3,4 (in UK), 5,6,7,8; English, French, German, Spanish materials The World Life Foundation PO Box 571 Bedford, TX 76095-0571 (800) 289-5433 (817) 285-0216 (fax) ??loubaum@airmail.net Offers air transport for client and one parent to facility for metabolic disorders treatment. METACHROMATIC LEUKODYSTROPHY See: Leukodystrophy; Tay-Sachs Disease METAPHYSEAL DYSOSTOSIS, TYPE B IV See: Shwachman Syndrome METHYLMALONIC ACIDEMIA See: Acidemia, Organic MICROCEPHALY FACES-The National Craniofacial Association PO Box 11082 Chattanooga, TN 37401 (800) 332-2373 (423) 266-1632 (423) 267-3124 (fax) ??Faces@mindspring.com http://www.faces-cranio.org 1,2,3,6,9; financial assistance for medical-related travel Genetic Alliance 4301 Conneticut Ave. NW, Ste. 404 Washington, DC 20008-2304 (202) 966-5557 (202) 966-8553 (fax) (800) 336-GENE (4363) helpline ??info@geneticalliance.org http://www.geneticalliance.org 1,2,3,4,6,7,9, Spanish materials. March of Dimes Birth Defects Foundation 1275 Mamaroneck Ave. White Plains, NY 10605 (888) 663-4637 (914) 997-4763 (fax) ??resourcecenter@modimes.org http://www.modimes.org 2,5,7,8 National Institute of Child Health & Human Development NICHD Clearinghouse PO Box 3006 Rockville, MD 20847 (800) 370-2943 (301) 984-1473 (fax) ??NICHDclearinghouse@mail.nih. gov. http://www.nichd.nih.gov 2 National Institute of Neurological Disorders & Stroke PO Box 5801 Bethesda, MD 20824 (800) 352-9424 (301) 496-5751 (301) 402-2186 (fax) http://www.ninds.nih.gov MICROPHTHALMIA See: Anophthalmia; Visual Impairments MICROSOMIA, HEMIFACIAL See: Craniofacial Disorders; Goldenhar Syndrome MICROTIA See also: Craniofacial Disorders Microtia-Atresia Support Group c/o Jack Gross 330 7th Ave., #1203 New York, NY 10001 (212) 947-0770 (212) 714-1224 (fax) ??GrossInsCo@aol.com 3 MIKAELIAN SYNDROME See: Ectodermal Dysplasias MILLER SYNDROME See: Nager & Miller Syndromes MILLER-DIEKER SYNDROME See: Lissencephaly MILLER-FISCHER SYNDROME See: Guillain-Barre Syndrome MILROY DISEASE See: Lymphatic Malformations; Lymphedema MITOCHONDRIAL DISORDERS United Mitochondrial Disease Foundation (UMDF) PO Box 1151 Monroeville, PA 15146-1151 (412) 793-8077 (412) 793-6477 (fax) ??umdf@nb.net http://www.umdf.org 1,2,3,4,5,6,7,8 MITOCHONDRIAL MYOPATHY See: Mitochondrial Disorders; Muscular Dystrophy MOEBIUS SYNDROME See also: Craniofacial Disorders; Limb Disorders The Moebius Syndrome News PO Box 147 Pilot Grove, MO 65276 (660) 834-3406 ??vmccarrell@mid.mo-net http://www.ciaccess.com/ moebius Moebius Syndrome Support Group 38883 FoxHolm Dr. Palmdale, CA 93551 (805) 267-2570 (voice/fax) ??lorit@netport.com http://www.wincom.net/moebi us/ 1,2,3,6,8,9 MONOSOMY X See: Turner Syndrome MORQUIO SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease MORVAN DISEASE See: Syringomyelia MOTOR-SENSORY NEUROPATHY, HEREDITARY See: Charcot-Marie-Tooth Disease MOYAMOYA DISEASE See: Stroke; Vascular Malformations MUCOLIPIDOSES See: Mucopolysaccharidosis; Mucolipidosis Type IV," Tay-Sachs Disease MUCOLIPIDOSIS TYPE IV See also: Mucopolysaccharidosis; Tay-Sachs Disease; Visual Impairments ML4 Foundation 719 East 17th St. Brooklyn, NY 11230 (718) 434-5067 (718) 859-7371 (fax) ??ml4@aol.com http://www.ml4.org 1,2,3,4,5,7,8,9 MUCOPOLYSACCHARIDOSIS See also: Metabolic Disorders; Tay-Sachs Disease The National Mucopolysaccharidosis (MPS) Society 102 Aspen Dr. Downingtown, PA 19335 (610) 942-0100 (610) 942-7188 (fax) ??presmps@aol.com http://www.mpssociety.org 1,2,3,4,5,6,8,9; Spanish materials MUCOSULFATIDOSIS See: Hearing Impairments; Ichthyosis; Leukodystrophy; Tay-Sachs Disease MULTIPLE CARBOXYLASE DEFICIENCY See: Metabolic Disorders MULTIPLE ENDOCRINE NEOPLASIA I See also: Adrenal Disorders; Diabetes Mellitus; Thyroid Disorders Multiple Endocrine Neoplasia I c/o Mrs. Cathy McMillan-Fitch Box 100 Meota, SK CAN SOM 1X0 (306) 892-2080 (voice/fax) ??hockey_freak99@hotmail.com 3,9 MULTIPLE SCLEROSIS Multiple Sclerosis Society of Canada 250 Bloor St. E, Ste. 1000 Toronto, ON CAN M4W 3P9 (800) 268-7582 (nearest division office) (416) 922-6065 (416) 922-7238 (fax) ??info@mssociety http://www.mssociety.ca 1,2,4,5,6,7,8 National Multiple Sclerosis Society 733 3rd Ave., 6th Fl. New York, NY 10017-3288 (800) 344-4867 (212) 986-3240 (212) 986-7981 (fax) ??nat@nmss.org http://www.nmss.org 1,2,4,5,8; Spanish materials MULTIPLE SULFATASE DEFICIENCY See: Hearing Impairments; Ichthyosis; Leukodystrophy; Tay-Sachs Disease MUSCLE PHOSPHOFRUCTOKINASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy MUSCLE PHOSPHORYLASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy MUSCULAR ATROPHY, PERONEAL See: Charcot-Marie-Tooth Disease MUSCULAR DYSTROPHY See also: Facio-Scapulo-Humeral Muscular Dystrophy; Ventilator Use Duchenne Parent Project 4785 Emerald Way Middletown, OH 45044 (800) 714-KIDS (5437) (513) 424-0696 (513) 425-9907(fax) ??patfurlong@aol.com http://www.parentdmd.org MUSCULAR DYSTROPHY, DEJERINE-LANDOUZY See also: Facio-Scapulo-Humeral Muscular Dystrophy; Ventilator Use Muscular Dystrophy Association 3300 E. Sunrise Dr. Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-2000 (520) 529-5300 (fax) ??mda@mdausa.org http://www.mdausa.org 1,2,4,5,7,8 Muscular Dystrophy Association of Canada 2345 Yonge St., Ste. 901 Toronto, ON CAN M4P 2E5 (800) 567-2873 (Canada only) (416) 488-2699 ext. 160 (416) 488-0107 (fax) ??motter@mdac.ca http://www.mdac.ca 1,2,3,4,5,6,7,8; French materials Muscular Dystrophy Family Foundation 2330 N. Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) (317) 923-6334 (fax) ??mdff@prodigy.net http://www.mdff.org 1,2,3,4,7 Society for Muscular Dystrophy information International PO Box 479 Bridgewater, NS CAN B4V 2X6 (902) 685-3961 (902) 685-3962 (fax) ??smdi@aura.com.com http://www.auracom.com/~smidi /index.html 1,2,4 MUSCULAR DYSTROPHY, FACIO-SCAPULO-HUMERAL See: Facio-Scapulo-Humeral Muscular Dystrophy MYASTHENIA GRAVIS Myasthenia Gravis Foundation of America 123 W. Madison, Ste. 800 Chicago, IL 60602 (800) 541-5454 (312) 853-0523 (fax) ??myastheniagravis@msn.com http://www.myasthenia.org 1,2,4,5,6,7,8,9; Spanish materials MYASTHENIC SYNDROME OF LAMBERT-EATON See: Charcot-Marie-Tooth Disease MYELIN DISORDERS See also: Leukodystrophy, The Canadian Myelin Research Initiative c/o Julie and Wayne Simmons 4330 Spinningdale Ct. Mississauga, ON CAN L5M 3J8 (905) 567-8843 (905) 567-9189 (fax) ??myelin@interlog.com 2,6,7,8,9 The Myelin Messenger 7320 N. Stable Ln. Prescott, AZ 86305 (520) 776-7556 1,3 The Myelin Project 2001 Pennsylvania Ave. NW Ste. 225 Washington, DC 20006-1850 (202) 452-8994 (202) 785-9578 (fax) ??myelin@erols.com http://www.myelin.org/ 1,2,8;Italian/French/German/ Danish/Spanish materials. MYELODYSPLASIA See: Anemia, Aplastic MYELOMA See also: Cancer; Leukemia International Myeloma Foundation 12650 Riverside Dr., Ste. 206 North Hollywood, CA 91607 (800) 452-2873 (818) 487-7455 (818) 487-7454 (fax) ??theimf@myeloma.org http://www.myeloma.org 1,2,3,4,6,7,8 MYELOMA, MULTIPLE See: Myeloma MYELOSYRINGOSIS See: Syringomyelia MYOADENYLATE DEAMINASE DEFICIENCY See: Muscular Dystrophy MYOCLONUS See also: Epilepsy; Opsoclonus-Myoclonus Syndrome Moving Forward 2934 Glenmore Ave. Kettering, OH 45409 (513) 293-0409 ??editormdp@aol.com http://www.acor.org/diseases/he matology/mpd 2 MYODENYLATE DEAMINASE DEFICIENCY See: Muscular Dystrophy MYOPATHIES, CONGENITAL See: Myotubular Myopathy, X-Linked MYOPATHY, CENTRONUCLEAR See: Myotubular Myopathy, X-Linked; Muscular Dystrophy MYOPATHY, HYPERTHYROID See: Muscular Dystrophy; Thyroid Disorders MYOPHOSPHORYLASE DEFICIENCY See: Glycogen Storage Diseases MYOSITIS See also: Autoimmune Disorders National Myositis Association 7720B El Camino Real, Ste. 367 Rancho La Costa, CA 92009 (800) 230-0441 (619) 436-2185 1,2,3,4,5,9 MYOSITIS OSSIFICANS See: Fibrodysplasis Ossificans Progressiva MYOTONIA, CONGENITA See: Muscular Dystrophy MYOTUBULAR MYOPATHY, X-LINKED See also: Muscular Dystrophy X-Linked Myotubular Myopathy Resource Group 2602 Quaker Dr. Texas City, TX 77590 (409) 945-8569 ??gscoggin@aol.com http://www.mtmrg.org 1,2,3,9 MYXEDEMA See: Thyroid Disorders N-ACETYL GLUTAMATE SYNTHETASE (NAGS) DEFICIENCY See: Urea Cycle Disorders NAEFELI-FRANCESCHETTI-JADASSOHN DYSPLASIA See: Ectodermal Dysplasias NAEGELI-FRANCESCHETTI-JADASSOHN SYNDROME See: Incontinentia Pigmenti NAGER &MILLER SYNDROMES See also: Craniofacial Disorders; Hearing Impairments; Limb Disorders Foundation for Nager and Miller Syndromes (FNMS) 1827 Grove St. #2 Glenview, IL 60025-2913 (800) 507-3667 (847) 724-6449 (fax) ??fnms@interaccess.com http://www.fnms.net 1,2,3,4,6,8 NASAL ENCEPHALOCELE See: Craniofacial Disorders NEMALINE MYOPATHY See: Muscular Dystrophy NEPHRITIS See: Kidney Diseases, Hereditary, Fetal Alcohol Syndrome NEUROFIBROMATOSIS See also: Acoustic Neuroma; Hearing Impairments; Visual Impairments National Neurofibromatosis Foundation 95 Pine St., 16th Fl. New York, NY 10005 (800) 323-7938 (212) 344-6633 (212) 747-0004 (fax) ??nnff@nf.org http://www.nf.org Neurofibromatosis, Inc 8855 Annapolis, Ste. 110 Lanham, MD 20706-2924 (800) 942-6825 (301) 577-8984 (301) 577-0016 (fax) ??nfinc1@aol.com http://www.nfinc.org 1,2,4,5,7,8, NEUROLOGICAL DISORDERS Association for Comprehensive Neurotherapy Latitudes PO Box 210848 Royal Palm Beach, FL 33421-0848 (561) 798-0472, (561) 798-9820 (fax) ??acn@latitudes.org http://www.latitudes.org NEUROMETABOLIC DISORDERS See: Metabolic Disorders NEURONAL CEROID LIPOFUSCINOSES See: Batten Disease NEUROPATHY, HEREDITARY, SENSORY MOTOR See: Charcot-Marie-Tooth Disease NEUROPATHY, PERIPHERAL See: Charcot-Marie-Tooth Disease NEUTROPENIA Neutropenia Support Assoc., Inc. PO Box 243 905 Corydon Ave. Winnipeg, MB CAN R3M 357 (800) 663-8876; (204) 489-8454 ??stevensl@neutropenia.ca http://www.neutropenia.ca 1,2,3,4,5,6,7, Promotes chapter development and involvement with the Neutropenia SCN International Regisry French materials Neutropenia SCN International Registry Puget Sound Plaza 1325 4th Ave., Ste. 620 Seattle, WA 98101-2509 (800) 726-4463 (206) 543-9749 (206) 543-3668 (fax) ??registry@u.washington.edu http://www.scnir.medicine.washington.edu/ 1,2 NEUTROPENIA-PANCREATIC INSUFFICIENCY See: Shwachman Syndrome NEVI, GIANT CONGENITAL See also: Craniofacial Disorders;; Ichthyosis; Klippel-Trenaunay Syndrome; Sturge-Weber Syndrome Nevus Network PO Box 1981 Woodbridge, VA 22195 (703) 492-0253, (405) 377-3403 ??nevusnet@bigfoot.com http://www.nevusnetwork.org 1,2,3,5,9 French/Spanish materials NEVILLE DISEASE See: Niemann-Pick Disease NEVO SYNDROME See: Sotos Syndrome NIEMANN-PICK DISEASE See also: Ataxia; Metabolic Disorders; Tay-Sachs Disease National Niemann-Pick Disease Foundation, Inc. N. 1590 Fairview Ln. Fort Atkinson, WI 53538 (920) 563-8677 (877) CURE-NPC (287-3672) (920) 563-5246 ??webmaster@nnpdf.org http://www.nnpdf.org Ara Parseghian Medical Research Foundation 1760 E. River Rd., Ste. 115 Tucson, AZ 85718 (520) 577-5106 (520) 577-5212 (fax) ??victory@parseghian.org http://www.parseghian.org 1,2,3,6,7,8, NONKETOTIC HYPERGLYCINEMIA See: Acidemia, Organic NOONAN SYNDROME See also: Cardio-Facio-Cutaneous Syndrome; Growth Disorders; Heart Disorders; Malignant Hyperthermia; Williams Syndrome (TNSSG) Noonan Syndrome Support Group, Inc. PO Box 145 Upperco, MD 21155 (888) 686-2224 (410) 374-5245 ??wandar@bellatlantic.net http://www.noonansyndrome.org NORMAN-ROBERTS SYNDROME See: Lissencephaly NORRIE DISEASE See also: Hearing Impairments/ Visual Impairments Norrie Disease Foundation Developmental Neurogenetics Unit Mass General Hospital CNY #6217 149 13 St. Charlestown, MA 02129 (617) 726-5718 (617) 724-9620 (fax) ??sims@helix.mgh.harvard.edu http://www.neuro.mgh. harvard.edu 2,3,4 NUTRITION The Oley Foundation 214 Hun Memorial A-28 Albany Medical Center Albany, NY 12208 (800) 776-OLEY (6539) (518) 262-5079 (518) 262-5528 ??bishopj@mail.amc.edu http://www.oley.org 1,2,3,6,7, NYHAN SYNDROME See: Lesch-Nyhan Syndrome OAV SYNDROME See: Goldenhar Syndrome OBSESSIVE COMPULSIVE DISORDER OC Foundation 337 Notch Hill Rd. North Branford, CT 06471 (203) 315-2190 (203) 315-2196 (fax) ??info@ocfoundation.org http://www.ocfoundation.org 1,2,3,4,5,6,7,8 OBSTRUCTIVE HYDROCEPHALUS See: Dandy-Walker Syndrome OCULO-AURICULO-VERTEBRAL SPECTUM See: Goldenhar Syndrome OCULOCEREBRORENAL SYNDROME See: Lowe Syndrome OCULODENTODIGITAL SYNDROME; TYPE I & II See: Ectodermal Dysplasias OCULOOSTEOCUTANEOUS SYNDROME See: Ectodermal Dysplasias ODONTOONYCHODERMAL DYSPLASlA See: Ectodermal Dysplasias ODONTOONYCHOHYPOHIDRO TIC DYSPLASlA See: Ectodermal Dysplasias ODONTOTRICHODYSPLASIA WITH NEUTROPENIA See: Ectodermal Dysplasias; Neutropenia ODONTOTRICHOMELIC SYNDROME See: Ectodermal Dysplasias OLDFIELD SYNDROME See: Peutz-Jeghers Syndrome; Polyposis OLIGOPHRENIA-MICROPHTHALMOS See: Norrie Disease OLIGOSACCHARIDOSES See: Tay-Sachs Disease OLLIER DISEASE See also: Growth Disorders Ollier's/Maffuci Self-Help Group c/o Bonnie Schmid-Hatch, founder 1824 Millwood Rd. Sumter, SC 29150 (803) 775-1757 (803) 934-0347 (fax) ??olliers@aol.com http://www.ollier-maffucci.org 1,3,4,9 ONDINE'S CURSE See: Central Hypoventilation Syndrome, Congenital OPITZ FG SYNDROME See: FG Syndrome OPITZ HYPERTELORISM-HYPOSPADIUS SYNDROME See: Opitz Syndrome OPITZ OCULOGENITOLARYNGEAL SYNDROME See: Opitz Syndrome OPITZ SYNDROME Opitz G/BBB Family Network PO Box 515 Grand Lake, CO 80447 (970) 627-8935 (phone/fax) (970) 627-8818 fax ??opitznet@mac.com http://www.gle.egsd.k12.co.us/o pitz/index.htm 1,2,3,6,8,9 OPITZ-BBBG COMPOUND SYNDROME See: Opitz Syndrome OPITZ-FRIAS SYNDROME See: Opitz Syndrome OPSOCLONUS-MYOCLONUS SYNDROME See also: Epilepsy; Myoclonus Opsoclonus-Myoclonus Support Network c/o Connie Quinn 725 North St. Jim Thorpe, PA 18229 (717) 325-3302 ??clquinn@ptd.net http://www.geocities:com/hotspri ngs/spa/2190 3 OPTIC NERVE HYPOPLASlA See: Septo-Optic Dysplasia ORBITAL HYPERTELORISM See: Craniofacial Disorders ORGANIC ACIDEMIA See: Acidemia, Organic ORNITHINE TRANSCARBAMYLASE (OTC) DEFICIENCY See: Urea Cycle Disorders OROFACIODIGITAL SYNDROME, TYPE I See: Ectodermal Dysplasias OSLER-WEBER-RENDU SYNDROME See: Hemorrhagic Telangiectasis, Hereditary OSTEITIS FIBROSA DISSEMINATA See: McCune-Albright Syndrome OSTEOCHONDROMATOSlS See: Exostoses, Multiple Hereditary OSTEOGENESIS IMPERFECTA See also: Growth Disorders Osteogenesis Imperfecta Foundation 804 W. Diamond Ave., Ste. 210 Gaithersburg, MD 20878 (800) 981-2663 (301) 947-0083 (301) 947-0456 (fax) ??bonelink@oif.org http://www.oif.org 1,2,3,4,5,6,7; Support groups; Spanish materials OSTOMY United Ostomy Association, Inc. 19722 MacArthur Blvd., Ste. 200 Irvine, CA 92612 (800) 826-0826 (949) 660-8624 (949) 660-9262 (fax) ??uoa@deltanet.com http://www.uoa.org 1,2,4,5,6,7; National Conference in Reno, Nevada in July United Ostomy Association of Canada, Inc PO Box 46057 College Park PO 444 Yonge St. Toronto, ON CAN M5B 2L8 (416) 595-5452 (416) 595-9924 (fax) ??uoacan@astral.magic.ca http://www3.ns.sympatico.ca/can ada/ostomy 1,2,3,4,5,6,7,8,9; youth network OXALOSIS & HYPEROXALURIA See also: Kidney Disorders Oxalosis & Hyperoxaluria Foundation 12 Pleasant St.. Maynard, MA 01754 (888)721-2432 PIN#5392 (978)461-0614 ??ohf@ohf.ultranet.com http://www.ohf.org 1,2,8 OXOPROLINURIA See: Acidemia, Organic PACHYGYRIA See: Lissencephaly PACHYONYCHIA, CONGENITAL See: Ectodermal Dysplasias PAGON SYNDROM See: Hydrocephalus; Lissencephaly PALLISTER-HALL SYNDROME See also: Anorectal Malformations; Pituitary Tumors Pallister-Hall Foundation Ross, 8 Heather Dr. #E White River Junct, VT 05001-9302 (802) 222-9683 ??messer@sover.net 2,3,4,9 PALLISTER-KILLIAN SYNDROME See also: Epilepsy Pallister-Killian Family Support Network 3700 Wyndale Ct. Ft Worth, TX 76109 (817) 927-8854 (817) 927-2073 (fax) 3 PALMOPLANTAR HYPERKERATOSIS AND ALOPECIA See: Ectodermal Dysplasias PANCREATIC INSUFFICIENCY WITH NEUTROPENIA See: Shwachman Syndrome PANCYTOPENIA, CONGENITAL See: Anemia, Fanconi PANHYPOPITUITARISM See: Growth Disorders PANMYELOPATHY See: Anemia, Aplastic PANMYELOPHTHISIS See: Anemia, Aplastic PAPILLOMAS See: Respiratory Papillomatosis, Recurrent PAPILLON-LEFEVRE SYNDROME See: Ectodermal Dysplasias PARALYSIS, PERIODIC See: Muscular Dystrophy PARALYTIC POLLO See: Polio PARAMYOTONIA CONGENITA See: Muscular Dystrophy PARKES-WEBER SYNDROME See: Klippel-Trenaunay Syndrome PARRY-ROMBERG SYNDROME See: Craniofacial Disorders PATIN SYNDROME See: Fibrodysplasis Ossificans Progressiva PDD See: Autism PELIZAEUS-MERZBACHER DISEASE See: Leukodystrophy PEMPHIGUS, FAMILIAL See: Ichthyosis PEPCK DEFICIENCY See: Lactic Acidosis; Mitochondrial Disorders PERIPHERAL NEUROPATHY See: Charcot-Marie-Tooth Disease PERONEAL MUSCULAR ATROPHY See: Charcol-Marie-Tooth Disease PERVASIVE DEVELOPMENTAL DISORDER (PDD) See: Autism PEUTZ-JEGHERS SYNDROME See also: Polyposis Hereditary Colon Cancer Registry c/o Jill D. Brensinger Johns Hopkins Hospital 550 N. Broadway, Ste. 108 Baltimore, MD 21205 (410) 614-4038 (410) 614-9544 (fax) ??hccregistry@jhmi.edu http://www.hopkins-coloncer.org 3,9 PEUTZ-TOURAINE SYNDROME See: Peutz-Jeghers Syndrome; Polyposis PFEIFFER SYNDROME See: Craniofacial Disorders PHAKOMATOSIS See: Tuberous Sclerosis PHENYLKETONURIA (PKU) See also: Metabolic Disorders Children's PKU Network 1520 State St., Ste. 111 San Diego, CA 92101 (619) 233-3202 (619) 233-0838 (fax) ??pkunetwork@aol.com 2,4,7 Spanish materials National PKU News c/o Virginia Schuett 6869 Woodlawn Ave. NE, Ste. 116 Seattle, WA 98115-5469 (206) 525-8140 (206) 525-5023 (fax) ??schuett@pkunews.org http://www.pkunews.org 1,2,4 PHOSPHOENOLPYRUVATE CARBOXYKINASE DEFICIENCY See: Lactic Acidosis; Mitochondrial Disorders PHOSPHOFRUCTOKINASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy PHOSPHOGLYCERATE KINASE DEFICIENCY See: Muscular Dystrophy PHOSPHOGLYCERATE MUTASE DEFICIENCY See: Muscular Dystrophy PHOSPHORYLASE B KINASE DEFICIENCY See: Glycogen Storage Diseases; Muscular Dystrophy PHOSPHORYLASE DEFICIENCY GLYCOGEN STORAGE See: Diseases; Muscular Dystrophy PIERRE ROBIN SYNDROME See: Craniofacial Disorders; Growth Disorders PIGMENT DISORDERS See: Albinism & Hypopigmentation; Vitiligo PILI TORTI AND ENAMEL HYPOPLASIA See: Ectodermal Dysplasias PILI TORTI AND ONYCHODYSPLASIA See: Ectodermal Dysplasias PITUITARY DISORDERS/TUMORS Pituitary Tumor Network Association 16350 Ventura Blvd., Ste. 231 Encino, CA 91436 (805) 499-9973 (805) 499-1523 (fax) ??ptna@pituitary.com http://www.pituitary.com 1,2,3,4,7,8 Pituitary Tumor Support Network of Canada 61 Markbrook Ln. Etiboke, ONT CAN M9V 5E7 (416) 864-5469 1,2,3,4,6,8 PITYRIASIS RUBRA PILARIS See: Ichthyosis POLIO Informed Parents Against VAPP (Vaccine Associated Paralytic Polio) PO Box 53212 Washington, DC 20009 (888) 363-8277 (703) 319-8277 (fax) ??NOVAPP@aol.com http://www.ipav.org 2,3,7,8,9 International Polio Network 4207 Lindell Blvd., #110 Saint Louis, MO 63108-2915 (314) 534-0475 (314) 534-5070 (fax) ??gini_intl@msn.com http://www.post-polio.org 1,2,4,6,8 Local support groups. POLYCYSTIC KIDNEY DISEASE See: Kidney Disorders POLYENDOCRINE ADENOMATOSIS See: Multiple Endocrine Neoplasia I POLYMYOSITIS See: Muscular Dystrophy; Myositis POLYNEURITIS, ACUTE IDIOPATHIC See: Guillain-Barre Syndrome POLYNEUROPATHY, CHRONIC RELAPSING See: Guillain-Barre Syndrome POLYOSTOTIC FIBROUS DYSPLASIA See: McCune-Albright Syndrome POLYPOSIS See also: Cancer; Peutz-Jeghers Syndrome Familial Gastrointestinal Cancer Registry Mount Sinai Hospital 1157-660 University Ave. Toronto, ON CAN MSG 1X5 (416) 586-8334 (416) 586-8644(fax) ??tberk@mtsinai.on.ca 1,2,3,4,9; French materials POLYRADICULONEUROPATHY See: Guillain-Barre Syndrome POMPE DISEASE See also: Glycogen Storage Diseases; Muscular Dystrophy; Tay-Sachs Disease PORPHYRIA Metabolic Disorders American Porphyria Foundation PO Box 22712 Houston, TX 77227 (713) 266-9617 (713) 871-1788 ??porphyrus@juno.com http://www.enterprise.net/apf 1,2,3,4,7,8,9 Metabolic Disorders Canadian Porphyria Foundation Box 1206 Neepawa, MB CAN ROJ 1H0 (204) 476-2800 (voice/fax) ??porphyria@cpf-inc.ca http://www.epf-inc.ca 1,2; French materials PORT WINE STAINS See: Sturge-Weber Sydrome POSTAXIAL ACROFACIAL DYSOSTOSIS See: Nager & Miller Syndromes PRADER-WILLI SYNDROME Ontario Prader-Willi Syndrome Association 1920 Yonge St. C104 Toronto, ON CAN M4S 3B2 (800) 563-1123 (416) 481-8657 (voice/fax) ??prader-willi@sympatico.ca http://www3.sympatico.ca/prader -willi/ 1,2,3,4,5,8,9; French materials Prader-Willi Foundation 223 Main St. Port Washington, NY 11050 (800) 253-7993 (516) 944-3173 (fax) ??foundation@praderwilli.inter.net http://prader_willi.inter.net 2,3,4,7,8 The Prader-Willi Syndrome Association (USA) 5700 Midnight Pass Rd., Ste. 6 Sarasota, FL 34242 (800) 926-4797 (941) 312-0400 (941) 312-0142 (fax) ??pwsausa@aol.com http://www.pwsausa.org 1,2,3,4,5,6,7,8,9; English, Spanish and French materials PROGERIA International Progeria Registry c/o W. Ted Brown, MD, PhD NY State Inst. for Basic Research in Developmental Disabilities 1050 Forest Hill Rd. Staten Island, NY 10314 (718) 494-5333 (718) 494-1026 (fax) ??wtbibr@aol.com 3,9 PROGRESSIVE HYPOERYTHEMIA See: Anemia, Aplastic PROGRESSIVE OSSEOUS HETEROPLASIA See: Connective Tissue Disorders; Fibrodysplasis Ossificans Progressiva PROPINONYL-COA CARBOXYLASE (PCC) See: Deficiency Acidemia, Organic PROPIONIC ACIDEMIA See: Acidemia, Organic PROTEUS SYNDROME See: Neurofibromatosis PROTOCOPROPORPHYRIA See: Liver Disorders; Porphyria PROTOPORPHYRIA See: Liver Disorders; Porphyria PRUNE BELLY SYNDROME Prune Belly Syndrome Network 100 UCLA Medical Plaza Ste. 690 Los Angeles, CA 90095 (310) 825-6865 (310) 794-9962 (fax) http://www.pedsuro.com 3 PSEUDO-HURLER POLYDYSTROPHY See: Mucopolysaccharidosis; Tay-Sachs Disease PSEUDOCHOLINESTERASE DEFICIENCY See: Malignant Hyperthermia PSEUDOXANTHOMA ELASTICUM (PXE) See also: Connective Tissue Disorders; Heart Disorders; Macular Diseases; Visual Impairments National Association for Pseudoxanthoma Elasticum 3500 E. 12th Ave. Denver, CO 80218-1910 (303) 355-3866 (303) 355-3859 (fax) ??(at Texas Tech.) derckd@ttuhsc.edu ??(at Denver hdqtrs.) pxenape@estreet.com http://www.napxe.org 1,5,6; newsletter provided on tape; low-vision clinic PSORIASIS National Psoriasis Foundation 6600 SW 92nd Ave., Ste.300 Portland, OR 97222 (503) 244-7404 (800) 723-9166 (503) 245-0626 (fax) ??getinfo@npfusa.org http://www.psoriasis.org 1,2,3,4,6,7,8,9; Spanish materials PTOSIS See: Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES) PULMONARY VALVULAR STENOSlS See: Heart Disorders PURINE METABOLIC DISORDERS Purine Research Society 5424 Beech Ave. Bethesda, MD 20814-1730 (301) 530-0354 (301) 564-9597 (fax) ??purine@erols.com http://www2.dgsys.com/~purine/ 2,8 PURPURA HEMORRHAGICA See: Purpura, Idiopathic Thrombocytopenia (ITP) PURPURA, IDIOPATHIC THROMBOCYTOPENIA (ITP) ITP Society Children's Blood Foundation 333 E. 38th St. Rm. 830 New York, NY 10016-2745 (800) 487-7010 (ITP Hotline) (212) 297-4336 (office) (212) 297-4340 (fax) ??cbf@nyp.org http://www.ultranet.com/~itpsoc 2 PYRIMIDINE METABOLIC DISORDERS See: Purine Metabolic Disorders PYROGLUTAMICACIDURIA See: Acidemia, Organic PYRROLORPHYRIA See: Porphyria PYRUVATE CARBOXYLASE DEFICIENCY See: Acidemia, Organic; Lactic Acidosis PYRUVATE DEHYDROGENASE DEFICIENCY See: Acidemia, Organic; Lactic Acidosis PYRUVATE DEHYDROGENASE PHOSPHATASE See: Lactic Acidosis; Q-T PROLONGATION See: Long Q-T Syndrome RAPP-HODGKINS SYNDROME see also: Cleft Palate; Craniofacial Disorders; Deaf-Blind; Ectodermal Dysplasias; Hearing Impairments; Visual Impairments RASMUSSEN ENCEPHALITIS See: Rasmussen Syndrome RASMUSSEN SYNDROME See also: Epilepsy; Seizure Disorders Rasmussen Syndrome and Hemispherectomoy Support Network c/o Al and Lynn Miller 8235 Lethbridge Rd Millersville, MD 21108 (410) 987-5221 (voice) [Omega]rssnlynn@aol.com http://medhlp.netusa.net/ http://www/rasm.htm http://www.familyvillage. wisc.edu/lib-rs.htm 1,2,3,6; Spanish/French/ Russian/Greek materials RECKLINGHAUSEN DISEASE See: Neurofibromatosis REFLEX SYMPATHETIC DYSTROPHY SYNDROME Reflex Sympathetic Dystrophy Syndrome Association of America 116 Haddon Ave, Ste. D Haddonfield, NJ 08033 (856) 795-8845 (voice/fax) ??jwbroatch@aol.com http://www.rsds.org 1,2,3,4,6,7,8 REFRACTORY ANEMIA See: Anemia, Aplastic REFSUM DISEASE See: Ichthyosis; Leukodystrophy; Tay-Sachs Disease RENAL DISORDERS See: Kidney Disorders RENDU-OSLER-WEBER SYNDROME See: Hemorrhagic Telangiectasis, Hereditary RESPIRATORY PAPILLOMATOSIS, RECURRENT Recurrent Respiratory Papillomatosis Foundation PO Box 6643 Lawrenceville, NJ 08648-0643 (609) 530-1443 (609) 530-1912 (fax) ??rrpf@rrpf.org www.rrpf.org 1,2,3,4,7,8,9 RETINITIS PIGMENTOSA see also: Macular Diseases; Usher Syndrome; Visual Impairments Retinitis Pigmentosa International PO Box 900 Woodland Hills, CA 91364 (800) 344-4877 (818) 992-0500 (818) 992-3265 (fax) ??RPINT@pacbell.net http://www.rpinternational.org 1,2,4,7,8,9; Spanish materials RP Research Foundation Fighting Blindness c/o Sharon Cole or Margot Alward 36 Toronto St., Ste. 910 Toronto, ON CAN M5C 2CS (800) 461-3331 (Canada only) (416) 360-4200 (416) 360-0060 (fax) 1,2,3,5,7,8; French materials The Foundation Fighting Blindness Executive Plaza 1, Ste. 800 11350 McCormick Rd. Hunt Valley, MD 21031 (888) 665-9010 (410) 785-1414 (410) 785-9687 (local TDD) (410) 771-9470 (fax) ??Mpalmer@blindness.org http://www.blindness.org 1,2,3,4,5,6,8,9; young adult program, retina donor program RETINOBLASTOMA See: Cancer; Visual Impairments National Retinoblastoma Parent Group PO Box 317 Watertown, MA 02471 (800) 562-6265 (617) 972-7444 (fax) 1,3 RETINOCEREBRAL ANGIOMATOSIS See: Von Hippel-Lindau Syndrome RETINOPATHY OF PREMATURITY (ROP) DH See also: Visual Impairments Prevent Blindness in Premature Babies PO Box 44792 Madison, WI 53744-4792 2,3,4,9 RETT SYNDROME International Rett Syndrome Association 9121 Piscataway Rd., Ste. 2B Clinton, MD 20735 (800) 818-7388 (301) 856-3334 (301) 856-3336 (fax) ??irsa@rettsyndrome.org http://www.rettsyndrome.org 1,2,3,4,6,7,8,9; Spanish/French/ Russian/German materials Ontario Rett Syndrome Association 147 Westdale Rd, Oakville, ON CAN L6L 4Z7 (905) 844-7673 (905) 884-8730 (fax) ??rettsont@cgocable.net http://www.cgocable.net/ ~rettsont 1,2,3,4,5,7,8,9 REYE SYNDROME See: Fatty Oxidation Disorder RILEY-DAY SYNDROME See: Familial Dysautonomia RING CHROMOSOME 15 See: Chromosome Deletions; Craniofacial Disorders; Epilepsy; Heart Disorders; Kidney Disorders; Limb Disorders; Scoliosis RING CHROMOSOME 18 See: Chromosome 13 & 18 Disorders; Chromosome 18 Disorders Chromosome Deletions; Craniofacial Disorders; Deaf-Blind; Hearing Impairments; Visual Impairments RING CHROMOSOME 21 See: Chromosome Deletions RING CHROMOSOME 22 See: Chromosome Deletions RING CHROMOSOME 4 See: Chromosome Deletions; Wolf-Hirschhom Syndrome RING CHROMOSOME 6 See: Chromosome 6 Disorders RING CHROMOSOME 9 See: Chromosome Deletions; Craniofacial Disorders ROBINOW SYNDROME See also: Craniofacial Disorders; Short Stature Robinow Syndrome Foundation c/o Karla M. Kruger PO Box 1072 Anoka, MN 55303 (612) 434-1152 (763) 434-3691 (fax) ??kmkruger@uswest.net http://www.Robinow.org 1,3,6 ROBINSON SYNDROME See: Ectodermal Dysplasias ROMANO-WARD SYNDROME See: Long Q-T Syndrome ROSAI-DORFMAN DISEASE See: Histiocytosis ROSSELI-GULIENETTI SYNDROME See: Ectodermal Dysplasias ROTHMUND-THOMPSON'S SYNDROME See: Ectodermal Dysplasias RSH SYNDROME See: Smith-Lemli-Opitz Syndrome RUBINSTEIN SYNDROME See: Rubinstein-Taybi Syndrome RUBINSTEIN-TAYBI SYNDROME See also: Craniofacial Disorders; Heart Disorders Rubinstein-Taybi Parent Group c/o Lorrie Baxter PO Box 146 Smith Center, KS 66967 (888) 447-2989 (785) 697-2989 (785) 697-2985 (fax) ??baxter@ruraltel.net http://www.rubenstein-taybi.org 1,2,3,9 RUSSELL SYNDROME See: Russell-Silver Syndrome RUSSELL-SILVER SYNDROME See also: Growth Disorders; Short Stature The Magic Foundation Russell-Silver Support Group 1327 N. Harlem Dr. Oak Park, IL 60302 (800) 3- Magic -3 (708) 383-0808 (708) 383-0899 (fax) ??mary@magicfoundation.org http://www.magicfoundation.org 2,3,4,5,6 SAETHRE-CHOTZEN SYNDROME See: Craniofacial Disorders SALAMON SYNDROME See: Ectodermal Dysplasias SANDHOFF DISEASE See: Tay-Sachs Disease SANFILIPPO SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease SCHEIE SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease SCHINZEL-GIEDION SYNDROME See: Apnea, Sleep; Deaf-Blind; Ectodermal Dysplasias; Epilepsy; Growth Disorders; Hearing Impairments; Visual Impairment SCID See: Immune Disorders SCLERODERMA See also: Arthritis; Autoimmune Disorders Scleroderma Federation 89 Newbury St., Ste. 201 Danvers, MA 01923 (800) 722-HOPE (978) 750-4499 (978) 750-9902 (fax) ??sfinfo@scleroderma.org http://www.scleroderma.org 1,2,3,4,5,6,7,8,9 Scleroderma Research Foundation PO Box 200 Columbus, NJ 08022 (800) 637-4005 (609) 723-7400 1,2,4 Scleroderma Foundation, Inc. 89 Newbury St, Danvors, MA 01923 (800) 722-HOPE (4673) (978) 750-4499 (978) 750-9902 (fax) ??sfinfo@scleroderma.org http://www.scleroderma.org 1,2,4,5,6,7,8,9. SCOLIOSIS National Scoliosis Foundation 5 Cabot Pl. Stoughton, MA 02072 (800) NSF-MYBACK (673-6922) (781) 341-6333 (781) 341-8333 (fax) ??scoliosis@aol.com http://www.scoliosis.org 1,2,5 SECKEL SYNDROME See: Craniofacial Disorders; Growth Disorders SEIZURE DISORDERS See also: Epilepsy THRESHOLD--intractable Seizure Disorder Support Group & Newsletter Epilepsy Foundation of New Jersey Lion Head Office Park., Ste. 8A 35 Beaverson Blvd. Brick, NJ 08733 (800) FSC-NJ10 (372-6510) (732) 262-8020 (732) 262-4373 (fax) ??fsnj@aol.com http://www.efnj.com 1 SENSORY AND AUTONOMIC NEUROPATHY, HEREDITARY See: Familial Dysautonomia SENSORY MOTOR NEUROPATHY, HEREDITARY See: Charcot-Marie-Tooth Disease SENSORY NEUROPATHY WITH ANHIDROSIS, CONGENITAL See: Familial Dysautonomia SEPTO-OPTIC DYSPLASIA See also: Pituitary Tumors; Visual Impairments FOCUS: For Our Children's Unique Sight 4460 Fogg Ct. San Diego, CA 92109 (858) 273-1473 (voice/fax) ??support@focusfamilies.org http://www.focusfamilies.org 1,2,3,9 SERUM PROTEASE INHIBITOR DEFICIENCY See: Alpha-1-Antitrypsin (AAT) Deficiency SEVERE COMBINED IMMUNODEFICIENCY (SCID) See: Immune Disorders SEX CHROMOSOME DISORDERS, FEMALE See: Turner Syndrome SEX CHROMOSOME DISORDERS, MALE See: Klinefelter Syndrome SHORT STATURE See also: Dwarfism; Growth Disorders Little People of America PO Box 745 Lubbock, TX 79408 (806) 797-8830 (voice/fax; call first) Engl./Span. (888)572-2001 (voice/fax; call first) ??lpadatabase@juno.com http://www.lpaonline.org 1,2,3,5,6; Spanish materials SHPRINTZEN SYNDROME See: Velo-Cardio-Facial Syndrome SHWACHMAN SYNDROME See also: Growth Disorders Shwachman Diamond Syndrome, Inc. c/o Joan Mowery 4118 Quincy St. St. Louis, MO 63116 (314) 352-1821 (phone/fax) (314) 461-6106 fax ??jmowery@mvp.net http://www.shwachman~ diamond.org 1,2,3,4,6,8,9;French/Italian/ Dutch materials SHWACHMAN-DIAMOND SYNDROME See: Shwachman Syndrome SHY-DRAGER/MULTIPLE SYSTEM ATROPHIES See also: Dysautonomia Shy-Drager Syndrome MSA Support Group 2004 Howard Ln. Austin, TX 78728 (866) 737-4999 (512) 251-3315 (fax) http://www.shy-drager.com SIALIDOSIS See: Mucopolysaccharidosis; Tay-Sachs Disease SIALOLIPIDOSIS See: Mucolipidosis Type IV SICKLE CELL ANEMIA See: Sickle Cell Disease SICKLE CELL DISEASE Sickle Cell Disease Association of America 200 Corporate Pointe, Ste. 495 Culver City, CA 90203-8727 (800) 421-8453 (310) 216-6363 (310) 215-3722 (fax) 1,2,3,4,5,6,8,9 Sickle Cell Disease Association of the Piedmont POBox 20964 Greensboro, NC 27420 (800) 733-8297 (336) 274-1507 (336) 275-7984 (fax) ??scdap@aol.com http://www.greensboro.com /sickle/ 1,2,3,4,7 SIDS See: Sudden Infant Death Syndrome (SIDS) SILVER SYNDROME See: Russell-Silver Syndrome SILVER-RUSSELL SYNDROME See: Russell-Silver Syndrome SIMPSON-GOLABI-BEHMEL SYNDROME See: Beckwith-Wiedermann Syndrome SKELETAL ANOMALIES See: Ectodermal Dysplasias SKELETAL DYSPLASIA See: Dwarfism/Growth Disorders; Short Stature SLEEP APNEA See: Apnea, Sleep SLO SYNDROME See: Smith-Lemli-Opitz Syndrome SLY SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease SMITH-LEMLI-OPITZ SYNDROME See: Craniofacial Disorders Smith-Lemli-Opitz Advocacy & Exchange 32 Ivy Ln. Glen Mills, PA 19342 (610) 485-9663 ??bhook@erols.com http://www.members.aol.com/slo 97/index.htm 1,2,3,6,9 SMITH-MAGENIS SYNDROME PRISMS: Parents & Researchers Interested in Smith-Magenis Syndrome 76 So. New Boston Road Francestown, NH 03043 (603) 547-8384 (603) 547-3043 (fax) ??cbessette@monad.net http://www.smithmagenis.org 1,2,3,4,5 SOTOS SYNDROME See also: Growth Disorders Sotos Syndrome USA Support Association PMB #235 3 Danada Sq E. Wheaton, IL 60187 (888) 246-SSSA (630) 682-8815 (international) ??sssa@well.com http://www.well.com/user/sssa 1,2,3,4,6 SOUQUES-CHARCOT SYNDROME See: Progeria SOUTH AFRICAN GENETIC PORPHYRIA See: Liver Disorders/Porphyria SPASMODIC DYSPHONIA See: Dystonia SPASMODIC TORTICOLLIS See: Dystonia SPASMODIC WRYNECK See: Dystonia SPASTIC PARAPLEGIA, FAMILIAR See: Ataxia SPEECH DISORDERS See: Aphasia; Apraxia; Stuttering SPHINGOMYELIN LIPIDOSIS See: Niemann-Pick Disease SPIELMEYER-VOGT DISEASE See: Batten Disease SPIELMEYER-VOGT-BATTEN SYNDROME See: Batten Disease SPINA BIFIDA See also: Arnold-Chiari Malformation; Hydrocephalus; Incontinence; Latex Allergy Spina Bifida Association of America 4590 MacArthur Blvd. NW, Ste. 250 Washington, DC 20007-4226 (800) 621-3141 (202) 944-3285 (202) 944-3295 (fax) ??sbaa@sbaa.org http://www.sbaa.org 1,2,4,5,6,8; Spanish materials, scholarship program Spina Bifida and Hydrocephalus Association of Canada 220-388 Donald St. Winnipeg, MB CAN R3B 2J4 (800) 565-9488 (Canada only) (204) 925-3650 (204) 925-3654 (fax) ??spinab@mts.net http://www.sbhac.ca 1,2,4,5,6,7,8; French materials SPINAL CORD INJURIES See also: Ventilator Use Christopher Reeve Paralysis Foundation 500 Morris Ave. Springfield, NJ 07081 (800) 225-0292 (973) 379-2690 (973) 912-9433 (fax) ??info@cvpf.org http://www.paralysis.org 1,8 National Spinal Cord Injury Association 8701 Georgia Ave., Ste. 500 Silver Spring, MD 20910-3723 (800) 962-9629 (hotline only) (301) 588-6959 (301) 588-9414 (fax) ??info@spinalcord org ??resource@spinalcord.org http://www.spinalcord.org 1,2,4,5,6,7,8, Spanish materials National Spinal Cord Injury Hotline 2200 Kernon Dr. Baltimore, MD 21207 (800) 526-3456 (410) 448-6623 (local) (410) 488-6627 (fax) ??scihotline@aol.com http://www.scihotlne.org 2,3,4,5 SPINAL MUSCULAR ATROPHY See also: Muscular Dystrophy; Ventilator Use Families of SMA PO Box 196 Libertyville, IL 60048-0196 (800) 886-1762 (847) 367-7620 (847) 367-7623 (fax) ??sma@interaccess.com http://www.fsma.org 1,2,3,4,5,6,7,8,9, Spanish materials SPINOCEREBELLAR ATAXIA See: Ataxia; Friedreich Ataxia SPLENIC ANEMIA, FAMILIAL See: Gaucher Disease SPONDYLOEPIPHYSEAL DYSPLASIA CONGENITA See: Cleft Palate; Growth Disorders; Visual Impairments SPONDYLOEPIPHYSEAL DYSPLASIA TARDA See: Growth Disorders SSPE See: Subacute Sclerosing Panencephalitis STAR PROTEIN DEFICIENCY See: Adrenal Disorders STARGARDT DISEASE See: Macular Diseases; Retinitis Pigmentosa; Visual Impairments STEELY HAIR DISEASE Menkes Disease STENGEL SYNDROME See: Batten Disease STENGEL-BATTEN-MAYOU-SPIELMEYER-VOGT DISEASE See: Batten Disease STICKLER SYNDROME Stickler Involved People (SIP) 15 Angelina Dr. Augusta, KS 67010 (316) 775-2993 http://www.sticklers.org ??houch@southwind.net 1,2,3,6 STROKE See also: Aphasia, Acquired; Heart Disorders National Stroke Association 9707 E. Easter Ln. Englewood, CO 80112-5112 (800) 787-6537 (303) 649-9299 (303) 649-9486 (fax) ??info@stroke.org http://www.stroke.org 1,2,5,6,7,8; Spanish/French materials Heart and Stroke Foundation of Canada 222 Queen SL Ste 1402 Ottawa, ON CAN K1P 5V9 (613) 569-4361 1-888-HSF-INFO (473-4636) (613) 569-3278 (fax) http://www.heartandstroke.ca http://www.fmcoeur.ca 2 (on Web or 888 phone), 4 (on 888 phone), 5, 7,8 STURGE-WEBER SYNDROME See also: Craniofacial Disorders; Epilepsy; Glaucoma; Klippel-Trenaunay Syndrome; Nevi, Giant Congenital; Neurofibramatosis; Tuberous Sclerosis; Von Hippel-Lindau Syndrome Sturge-Weber Foundation PO Box 418 Mount Freedom, NJ 07970 (800) 627-5482 (927) 895-4445 (927) 895-4846 (fax) ??swf@sturge-weber.com http://www.sturge-weber.com 1,2,3,4,6,7,8,9; online support group Sturge-Weber Foundation (Canada) Inc 1960 Prairie Ave. Port Coquitlam, BC CAN V3B 1V4 (604) 942-9209 (604) 942-6429 (fax) ??kmoore@axionet.com http://www.inforamp.net/~cvs05 90 1,2,3,4,6,7,8,9 STUTTERING National Center for Stuttering 200 East 33rd St. New York, NY 10016 (800) 221-2483 (212) 683-1372 (fax) ??executivedirector@stuttering. com http://www.stuttering.com 2,4,5; Spanish materials Speak Easy c/o Mike Hughes 95 Evergreen Ave. St John, NB CAN E2N 1H4 (506) 696-6799 (voice/fax) (800) 345-9022(voice/fax) ??info@speakeasycanada.com http://www.speakeasycanada. com 1,2,4,5,6,7 Stuttering Foundation of America PO Box 11749 Memphis, TN 38111-0749 (800) 992-9392 (901) 452-7343 (901) 452-3931 (fax) ??stuttersfa@aol.com http://www.stuttersfa.org 2,4,5: Spanish materials SUBACUTE NECROTIZING ENCEPHALOPATHY See: Mitochondrial Disorders SUBACUTE SCLEROSING PANENCEPHALITIS See also: Epilepsy; Visual Impairments National Subacute Sclerosing Panencephalitis Registry c/o Paul Dyken, Director Institute of Research in Childhood Neurodegenerative Diseases PO Box 70191 Mobile, AL 36670-0191 (334) 478-6424 (334) 476-8277 (fax) ??pdyken@aol.com 2,6,9 SUCCINYLCHOLINE SENSITIVITY See: Malignant Hyperthermia SUDDEN INFANT DEATH SYNDROME (SIDS) Canadian Foundation for the Study of Infant Deaths 586 Eglinton Ave E., Ste. 308 Toronto, ON CA M4P 1P2 (800) 363-7437(Canada Only) (416) 488-3260 (416) 488-3864 (fax) ??sidsinfo@sidscanada.org http://www.sidscanada.org/sids 1,2,3,4,5,6,8,9; French/Spanish materials National Sudden Infant Death Syndrome Resource Center 2070 Chain Bridge Rd., Ste. 450 Vienna, VA 22182 (703) 821-8955 (703) 821-2098 (fax) ??sids@circsol.com http://www.circsol.com/sids 1,2,4; Spanish materials SUDECK ATROPHY See: Reflex Sympathetic Dystrophy Syndrome SULFATIDOSIS, JUVENILE, AUSTIN TYPE See: Hearing Impairments; Ichthyosis; Leukodystrophy; Tay-Sachs Disease SURDICARDIAC SYNDROME See: Hearing Impairments; Long Q-T Syndrome SWEDISH PORPHYRIA See: Porphyria SYNDACTYLIC OXYCEPHALY See: Apert Syndrome SYRINGOBULBIA See: Syringomyelia SYRINGOMYELIA ASAP: American Syringomyelia Alliance Project PO Box 1586 300 Green St. Ste. 206 Longview, TX 75606-1586 (800) 272-7282 (903) 236-7079 (903) 757-7456 (fax) http://www.asap4sm.com SYSTEMIC ELASTORRHEXIS OF TOURAINE See: Pseudoxanthoma Elasticum (PXE) SYSTEMIC MAST CELL DISEASE See: Mast Cell Disease, Systemic TANGIER DISEASE See: Tay-Sachs Disease TARGET CELL ANEMIA See: Cooley Anemia TARUI DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy TAY SYNDROME See: Ichthyosis TAY-SACHS DISEASE National Tay-Sachs and Allied Diseases Association 2001 Beacon St., Ste 204 Boston, MA O2135 (800) 90-NTSAD (68723) (617) 277-4463 (617) 277-0134 (fax) ??ntsad-boston@worldnet.att.net http://www.ntsad.org 1,2,3,4,5,6,7,8 Russian materials TEF (TRACHEOESOPHAGEAL FISTULA) See: VACTERL Association TESCHLER-NICOLA/KILLIAN SYNDROME See: Pallister-Killian Syndrome THALASSEMIA MAJOR See: Cooley Anemia THROMBOCYTOPENIA ABSENT RADIUS (TAR) SYNDROME See also: Heart Disorders; Kidney Disorders; Short Stature Thrombocytopenia Absent Radius Syndrome Association 212 Sherwood Dr. Egg Harbor Twp, NJ 08234-7658 (609) 927-0418 (609) 653-8639 (fax) 1,2,3,4,9 THYROID DISORDERS See also: Hypoparathyroidism Thyroid Foundation of America Ruth Sleeper Hall RSL 350 40 Parkman St. Boston, MA 02114-2698 (800) 832-8321 (617) 726-8500 (617) 726-4136 (fax) ??info@tsh.org (for thyroid questions) ??admin@tsh.org http://www.tfawev.org/pub/tfa 1,2,5,8 Thyroid Foundation of Canada 96 Mack St. Kingston, ON CAN K7L 1N9 (613) 544-8364 (613) 544-9731 (fax) ??thyroid@kos.net http://www.home.ican.net/~!thyr oid.Canada.html 1,2,3,7,8 TOOTH AND NAIL SYNDROME See: Ectodermal Dysplasias TORSION DYSTONIA, IDIOPATHIC See: Dystonia TOURETTE SYNDROME See also: Attention Deficit Disorder; Obsessive-Compulsive Disorder Tourette Syndrome Association 42-40 Bell Blvd. Bayside, NY 11361-2820 (718) 224-2999 (718) 279-9596 (fax) ??ts@tsa-usa.org http://www.tsa-usa.org 1,2,4,5,6,7,8,9; Spanish materials Tourette Syndrome Foundation of Canada 194 Jarvis St., Ste. 206 Toronto, ON CAN M5B 2B7 (800) 361-3120 (Canada only) (416) 861-8398 (416) 861-2472 (fax) ??tsfc.org@sympatico.ca http://www.tourette.ca 1,2,3,4,5,6,7,8,9; school inservicing program; print material in French and English:; kids' programs TOXIC PARALYTIC ANEMIA See: Anemia, Aplastic TOXOCARIASIS National Toxicariasis Foundation Project Mustard Seed PO Box 512 Edwardsville, IL 62025 (618) 659-1212 ??lmsjursen@hotmail.com 1,2,3,4,5,6,7,8,9 TREACHER COLLINS SYNDROME See also: Craniofacial Disorders; Hearing Impairments Treacher Collins Foundation PO Box 683 Norwich, VT 05055-0683 (800) 823-2055 (802) 649-3050 http://www.treachercollinsfnd.org 1,2,3,4,6 TREMOR International Tremor Foundation 7046 W 105th St. Overland Park, KS 66212-1803 (888) 387-3667 (913) 341-1296 (fax) ??staff@essentialtremor.org http://www.essentialtremor.org 1,2,3,4,5,7,8,9 TRICHODENTOOSSEOUS SYNDROME; TYPES I, II & III See: Ectodermal Dysplasias TRICHODYSPLASIA-ONYCHOGRYPOSIS -HYPOHIDROSIS-CATARACT See: Ectodermal Dysplasias TRICHOFACIOHYPOHIDROTIC SYNDROME See: Ectodermal Dysplasias TRICHONYCHODENTAL DYSPLASIA See: Ectodermal Dysplasias TRICHONYCHODYSPLASIA WITH XERODERMA See: Ectodermal Dysplasias TRICHOOCULODERMOVERTEB RAL SYNDROME See: Ectodermal Dysplasias TRICHOODONTOONYCHIAL DYSPLASIA See: Ectodermal Dysplasias TRICHOODONTOONYCHO-HYPOHIDROTIC DYSPLASIA WITH CATARACT See: Ectodermal Dysplasias TRICHOODONTOONYCHODER MAL SYNDROME See: Ectodermal Dysplasias TRICHOODONTOONYCHODYSP LASIA WITH PILI TORTI See: Ectodermal Dysplasias TRICHOPOLIODYSTROPHY See: Menkes Disease TRICHORHINOPHALANGEAL (TRP) SYNDROME See: Ectodermal Dysplasias TRICHOTILLOMANIA See: Obsessive-Compulsive Disorder TRIPHALANGEAL THUMBS-ONYCHODYSTROPHY -DEAFNESS See: Ectodermal Dysplasias; Hearing Impairments TRP SYNDROME, TYPE I See: Ectodermal Dysplasias TRPS SYNDROME, TYPE II See: Ectodermal Dysplasias TUBEROUS SCLEROSIS See also: Autism; Epilepsy; Learning Disabilities National Tuberous Sclerosis Association 8181 Professional Pl., Ste. 110 Landover, MD 20785-2226 (800) 225-6872 (301) 459-9888 (301) 459-0394 (fax) ??ntsa@ntsa.org http://www.ntsa.org 1,2,3,4,9; national volunteer support network Tuberous Sclerosis Canada Sclerose Tubereuse 2443 New Wood Dr. Oakville, ON CAN L6H 5Y3 (800) 347-0252 (905) 257-1997 (905) 257-4778 (fax) ??jillian.dasilva@ablelink.org http://www.sky.net/~adamse/tub erous.htm 1,2,3,4,7,8,9 TURCOT SYNDROME See: Brain Tumors; Cancer TURNER SYNDROME See also: Growth Disorders Turner Syndrome Society of Canada 814 Glencairn Ave. Toronto, ON CAN M6B 2A3 (800) 465-6744 (416) 781-2086 (416) 781-7245 (fax) ??tssincan@web.net http://www.turnersyndrome.ca 1,2,3,4,5,6, French Materials Turner Syndrome Society of the US 14450 TC Jester, Ste. 260 Houston, TX 77014 (800) 365-9944 (832) 249-9988 (612) 249-9987 (fax) ??shel@turner-syndrome-us.org http://www.turner-syndrome-us.org 1,2,3,5,6,9; Spanish materials TWIN-RELATED DISEASES Conjoined Twins International PO Box 10895 Prescott, AZ 86304-0895 ??dwdegeraty@excelonline.com Twin Hope 2592 West 14th St. Cleveland, OH 44113 (216) 687-2544 ??twinhope@twinhope.com http://www.twinhope.com 1,2,3,4,5,7,8,9; materials available in Spanish, German, and French: family guides TWIN TO TWIN TRANSFUSION SYNDROME See also: Twin-Related Diseases Twin to Twin Transfusion Syndrome Foundation 411 Longbeach Parkway Bay Village, OH 44140 (440) 899-8887 (440) 899-1184 (fax) ??info@tttsfoundation.org http://www.tttsfoundation.org 1,2,3,4,5,7,8,9 TYROSINEMIA, HEREDITARY, HEPATORENAL TYPE/ TYROSINEMIA TYPE I, TROSYLURIA See also: Kidney Disorders/ Liver Disorders Groupe Aide aux Enfants Tyrosinemiques du Quebec 162 Rue Granville Jonquiere, QC CAN G7S 2B9 (418) 548-1580 ??gerard.tremblay@sympatico.ca http://www.members.xoom.com/ Tyrosine/tyrosine.html 2,4,8,9; English/French materials; support available in Spanish ULCERATIVE COLITIS See: Crohn's Disease UREA CYCLE DISORDERS See also: Metabolic Disorders National Urea Cycle Disorders Foundation 4841 Hill St.. La Canada, CA 91011 (800) 386-8233 ??info@nucdf.org http://www.nucdf.org 1,2,3,4,6,7,8,9 UROLOGIC DISORDERS See: Incontinence/Kidney Diseases, Hereditary; Kidney Disorders UROSTOMY See: Ostomy URTICARIA PIGMENTOSA See: Mast Cell Diseases USHER SYNDROME See also: Deaf-Blind; Hearing Impairments; Retinitis Pigmentosa; Visual Impairments Usher Around The World c/o Kathie Anderson PO Box 17318 Minneapolis, MN 55417 (612) 729-4630 (voice/TDD) (612) 724-6982 (fax) 1,3 VACTERL ASSOCIATION See also: Anorectal Malformations; CHARGE Association; Heart Disorders; Kidney Disorders; Limb Disorders; Spina Bifida TEF/VATER International Support Network c/o Greg and Terri Burke 15301 Grey Fox Rd. Upper Marlboro, MD 20772 (301) 952-6837 (301) 952-9152 (fax) ??tefvater@ix.netcom.com http://www.tefvater.org 1,2,3,7,8,9 VAN MEERKEREN I SYNDROME See: Ehlers-Danlos Syndrome VASCULAR MALFORMATIONS See: Klippel Trenaunay Syndrome; Lymphatic Malformations; Moyamoya Disease; Sturge-Weber Syndrome; Von Hippel-Lindau Syndrome VATER ASSOCIATION See: VACTERL Association VELO-CARDIO-FACIAL SYNDROME See also: CHARGE Association; Craniofacial Disorders; Heart Disorders Northeast VCFS Support Group 2 Lansing Dr. Salem, NH 03079 (603) 898-6332 ??MLADJA@aol.com 1,2,3,5,9; international educational foundation for research Velo-Cardio-Facial Syndrome Educational Foundation, Inc. Upstate Medical University University Hospital 708 Jacobsen Hall (C.D.U.) 750 E. Adams St. Syracuse, NY 13210 (315) 464-6590 (315) 464-6593 ??vcfsef@mail.upstate.edu http://www.vcfs.org 2,3,4,9 VENTILATOR USE Citizens for Independence in Living & Breathing 78 Golfwood Heights Toronto, ON CAN M9P 3M2 (416) 244-2248 (phone/fax) 2,3,4,6,7,9 International Ventilator Users Network (IVUN) 4207 Lindell Blvd., #110 St Louis, MO 63108-2915 (314) 534-0475 (314) 534-5070 (fax) http://www.postpolio.org/index.html 1,2,3,4,6,7,9 VENTRICULAR DEFECTS See: Heart Disorders VERMIS CEREBELLAR AGENESIS See: Joubert Syndrome VESTIBULAR DISORDERS See also: Balance Disorders & Dizziness Vestibular Disorders Association PO Box 4467 Portland, OR 97208-4467 (800) 837-8428 (503) 229-8064 (fax) ??veda@vestibular.org http://www.vestibular.org 1,2,3,4,5 Spanish materials VISUAL IMPAIRMENT/ HEARING IMPAIRMENT See: Deaf-Blind VISUAL IMPAIRMENTS See also: Albinism; Glaucoma; Macular Diseases; Retinitis Pigmentosa; Retinoblastoma; Retinopathy of Prematurity; Septo-Optic Dysplasia; Usher Syndrome American Council of the Blind 1155 15th St NW, Ste.1004 Washington, DC 20005 (800) 424-8666 (202) 467-5081 (202) 467-5085 (fax) ??info@acb.org http://www.acb.org 1,2,4,5,6 American Foundation for the Blind 11 Penn Plaza, Ste. 300 New York, NY 10001 (800) 232-5463 (212) 502-7600 (212) 502-7662 (TDD) ??afbinfo@afb.org http://www.afb.org 1,2,4,5,6,8 Blind Children's Center 4120 Marathon St. Los Angeles, CA 90029 (800) 222-3566 (800) 222-3567 (CA only) (323) 664-2153 (323) 665-3828 (fax) ??info@blindchildrenscenter.org http://www.blindchildrenscenter.o rg 1,2,3,4,8; Spanish materials Blind Children's Fund 4740 Okemos Rd. Okemos, MI 48864 (517) 347-1357 (517) 347-1459 (fax) [Omega]blindchfnd@aol.com http://www.blindchildrensfund. org 1,2,4,6 Blind Children's Fund Resource Center 2971 53rd St. SE. Auburn, WA 98092 (206) 735-6350 (voice/fax) ??blindchildrensfund@charitiesusa.com 1,2,4,6 Braille Institute of America 741 N. Vermont Ave. Los Angeles, CA 90029 (323) 663-1111 (323) 663-0867 (fax) ??info@braileinstitute.org http://www.brailleinstitute.org Canadian National Institute for the Blind 1929 Bayview Ave. Toronto, ON CAN M4G 3E8 (416) 486-2500 (416) 480-7417 (TTY) (416) 480-7699 (fax) ??marjerb@east.cnib.ca http://www.cnib.ca 1,2,3,4,5,7,8; French materials Council of Families with Vision Impairment 6212 W. Franklin St. Richmond, VA 23226 (804) 288-0395 1,2,3,4,6,7 The Foundation for Fighting Blindness Executive Plaza I, Ste. 800 11350 McCormick Rd. Hunt Valley, MD 21031-1014 (800) 683-5551 (800) 683-5551 (TDD) (410) 785-9687 (local TDD) (410) 771-9470 (fax) ??Mpalmer@blindness.org http://www.blindness.org The Lighthouse National Center for Vision and Child Development 111 East 59th St. New York, NY 10022 (800) 334-5497(voice) (212) 821-9200 (voice) (212) 821-9713 (TTY) (212) 821-9705 (fax) ??mbeck@lighthouse.org http://www.lighthouse.org 1,2,4,5,7; Spanish materials National Association for Parents of Children with Visual Impairments PO Box 317 Watertown, MA 02471 (800) 562-6265 (617) 972-7441 (617) 972-7444 (fax) ??napvi@perkins.pvt.k12.ma.us http://www.spedex.com/napvi 1,2,3,5,6,7; Spanish materials National Association for Visually Handicapped 22 W 21st St., 6th Fl. New York, NY 10010 (212) 889-3141 (212) 727-2931 (fax) ??staff@navh.org http://www.navh.org 1,2,4,7; Spanish/Russian materials; large-print lending library National Braille Press 88 St. Stephen St. Boston, MA 02115 (800) 548-7323 (617) 266-6160 (617) 437-0456 (fax) ??orders@nbp.org http://www.npb.org 2 National Organization of Parents of Blind Children National Center for the Blind 1800 Johnson St. Baltimore, MD 21230 (410) 659-9314 x360 (410) 685-5653 (fax) http://www.nfb.org 1,2,3,4,5,6,7; Spanish materials. Prevent Blindness America 500 E Remington Rd. Schaumburg, IL 60173-4557 (800) 331-2020 (847) 843-2020 (847) 843-8458 (fax) [Omega]74777.100@compuserve.com http://www.prevent_blindness.org 1,2,5,6,7,8; Spanish materials Recording for the Blind & Dyslexic 20 Roszel Rd. Princeton, NJ 08540 (609) 520-8079 (609) 520-7990 (fax) ??info2rfbd.org http://www.rfbd.org 2 Vision World Wide, Inc. 5707 Brockton Dr., Ste. 302 Indianapolis, IN 46220-5481 (800) 431-1739 (317) 254-1332 (317) 251-6588 (fax) ??info@visionww.org http://www.visionww.org 1,2,4, VITAMIN B12 METABOLISM; INBORN ERROR OF See: Cobalamin (B12) Defiency VITILIGO The Canadian Vitiligo Society Dr. Danuta Pawlowski University Health Network Toronto Western Hospital 8th Fl., Rm. 542 399 Bathurst St Toronto, Ontario CAN M5T 2S8 (416) 603-5721 (416) 603-2782 (fax) National Vitiligo Foundation 611 South Fleishel Ave. Tyler, TX 75701 (903) 531-0074 (903) 525-1234 (fax) ??vitiligo@trimofran.org http://www.vitiligofoundation.org 1,2,3,4,5,6,7,8,9 VON GIERKE DISEASE See: Glycogen Storage Diseases VON HIPPEL-LINDAU SYNDROME See also: Ataxia; Balance Disorders & Dizziness; Brain Tumors; Visual Impairments Von Hippel-Lindau Syndrome Family Alliance 171 Clinton Rd. Brookline, MA 02445-5815 (800) 767-4845 (617) 277-5667 (617) 734-8233 (fax) ??info@vhl.org http://www.vhl.org 1,2,3,4,5,7,8,9; Spanish/French/German/ Dutch/Italian materials. VON RECKLINGHAUSEN DISUSE See: Neurofibromatosis VON WILLEBRAND DISEASE See: Hemophilia VROLIK DISEASE, TYPE II See: Osteogenesis Imperfecta WAGR SYNDROME See also: Aniridia and Wilm's Tumor The WAGR Network c/o Kelly Trout 3456 Brandon Drive Valdosta, GA 31605 (229) 244-7945 ??2fish@surfsouth.com http://www.wagr.org WALBAUM-DEHEANE-SCHLEMMER SYNDROME See: Ectodermal Dysplasias WALKER-WARBURG SYNDROME See: Hydrocephalus; Lissencephaly WARBURG SYNDROME See: Hydrocephalus/ Lissencephaly WEBER SYNDROME See:Sturge-Weber Syndrome WEGENER GRANULOMATOSIS See also: Immune Disorders Wegener's Granulomatosis Support Group, Inc (International) PO Box 28660 Kansas City, MO 64188-8660 (800) 277-9474 (816) 436-8211 (fax) ??wgsg@wgsg.org http://www.wgsg.org 1,2,3,4,5,6; international conferences WERDNIG-HOFFMAN DISEASE See:Spinal Muscular Atrophy WERLHOF DISEASE See: Purpura, Idiopathic Thrombocytopenia (ITP) WERMER SYNDROME See: Multiple Endocrine Neoplasia I WERNER SYNDROME See: Progeria WHISTLING FACE SYNDROME See: Freeman-Sheldon Syndrome WHISTLING FACE-WINDMILL VEIN HAND SYNDROME See: Freeman-Sheldon Syndrome WHITE MATTER DISORDERS See: Leukodystrophy WHITE SPOT DISEASE See: Vitiligo WHITNALL-NORMAN SYNDROME See: Norrie Disease WILLIAMS SYNDROME See also: Autism; Attention Deficit Disorder; Growth Disorders; Heart Disorders; Learning Disabilities; Noonan Syndrome Williams Syndrome Association PO Box 297 Clawson, MI 48017-0297 (248) 541-3630 (248) 541-3631 (fax) ??tmokaba@aol.com http://www.williams-syndrome.org 1,2,3,4,5,6,8 DNA research bank, annual music camp WILLIAMS-BEUREN SYNDROME See: Williams Syndrome WILM'S TUMOR See: WAGR Syndrome, Ambiguous Genitalia WILSON'S DISEASE Wilson's Disease Association 4 Navaho Dr. Brookfield, CT 06804-3124 (800) 399-0266 (203) 775-9666 ??hasellner@worldnet.att.net http://www.wilsonsdisease.org WISKOTT-ALDRICH SYNDROME See: Immune Disorders; Purpura, Idiopathic Thrombocytopenia WOLF SYNDROME See: Wolf-Hirschhorn Syndrome WOLF-HIRSCHHORN SYNDROME See also: Chromosome 4p- 4p- Parent Network C/o Bonnie Radtke 1874 NW 108 Ave Plantation, FL, 33322 (954) 476-9345 ??bbr@juno.com http://members.aol.com/Ibent503 /whs 1,2,3,6,9 Wolf-Hirschhorn Syndrome Support Group and Newsletter c/o Brenda Grimmett 5536 Virginia Ct. Amherst, OH 44001 (440) 282-1460 (440) 989-2005 (fax) ??bgrimmett@eriecoast.com http://members.aol.com/Ibent503 /whs 1,2,3,4,6,9 X-LINKED COPPER DEFICIENCY See: Menkes Disease X-LINKED COPPER MALABSORPTION See: Menkes Disease X-LINKED MYOTUBULAR MYOPATHY See: Myotubular Myopathy, X-Linked; Muscular Dystrophy XANTHOGRANULOMATOSIS, JUVENILE See: Histiocytosis XERODERMA PIGMENTOSUM Canadian Organization of Rare Disorders (CORD) PO Box 814 Coaldale, AB CAN T1M 1M7 (877) 702-7273 (403) 345-4544 (403) 345-3948 (fax) http://www.cord.ca 1,4,5,6 Easter Seals Society 1185 Eglington Ave., Ste. 800 North York, ON CAN M3C 3C6 (416) 421-8377 (416) 696-1035 (fax) ??info@easterseats.org http://www.easterseals.org XP Society PO Box 4759 Poughkeepsie, NY 12602 (518) 851-2612 (phone/fax) http://www.xps.org XERODERMA-TALIPES-ENAMEL DEFECT See: Ectodermal Dysplasias ZANIER-ROUBICEK SYNDROME See: Ectodermal Dysplasias ZELLWEGER SYNDROME See: Leukodystrophy ZIEHEN-OPPENHEIM DISEASE See: Dystonia Birth Defect Research for Children 930 Woodcock Rd., Ste. 225 Orlando, FL 32803 (407) 245-7035 (407) 895-0824 (fax) http://www.birthdefects.org ??abdc@birthdefects.org 1,2,3,4,5,9 Canadian Organization for Rare Disorders (CORD) PO Box 814 Coaldale, AB CAN T1M 1M7 (877) 302-7273 (403) 345-3948 (fax) (403) 345-4544 ??office@cord.ca http://www.cord.ca 1,2,3,4 Easter Seal Society 1185 Eglinton Ave. E, Ste. 706 North York, ON CAN M3C-3C6 (416) 421-8377 (416) 696-1035 (fax) ??info@easterseals.org http://www.easterseals.org 1,4,5,6,7,8 MUMS Mothers United for Moral Support c/o Julie Gordon 150 Custer Ct. Green Bay, WI 54301-1243 (920) 336-5333 (920) 339-0995 (fax) ??mums@netnet.net http://www.netnet.net/mums/ 1,2,3,4,5,9 National Organization for Rare Disorders (NORD) 100 Rt. 37, PO Box 8923 New Fairfield, CT 06812-8923 (800) 999-6673 (203) 746-6518 (203) 746-6927 (TDD) (203) 746-6481 (fax) ??orphan@rarediseases.org http://www.rarediseases.org NPPSIS National Parent to Parent Support and Information Service PO Box 907 Blue Ridge, GA 30513 (800) 651-1151 (828) 494-5415 (828) 494-5414 (fax) http://www.nppsis.org ??nppsis@elijay.com Parent-to-Parent Link Program The Easter Seal Society, Ontario 1185 Eglington Ave., Ste. 800 North York, ON CAN M3C 3C6 (416) 421-8377 (416) 696-1035 (fax) http://www.easterseals.org ??info@easterseals.org Research Trust for Metabolic Diseases in Children (RTMDC) Golden Gates Lodge Weston Rd., Crewe Cheshire, England CW2 5XN UK (44) 1270 250221 (44) 1270 250244 (fax) http://www.medhlp.netusa.net/a gsg/agsg1183/htm OTHER RESOURCES Search & Respond c/o Exceptional Parent Magazine 555 Kinderkamack Rd. Oradell, NJ 07649-1517 (800) 372-7368 (Toll-free in US) (201) 634-6550 (201) 634-6570 (fax) ??epedit@aol.com http://www.eparent.com Exceptional Parent magazine accepts letters from parents and professionals searching for information, networking, or advice from others on a disability or related problem. Some are selected for publication in our monthly Search column. Anyone offering a suggestion may write a Respond letter, which will be forwarded and may also be published. Matching Resources This directory of "Matching Resources"--both national and international--can help some parents who have children with extremely rare conditions or unique combinations of disabilities. Others may be dealing with unique family situations, such as single parenting, raising twins, or adoption. These networking organizations do parent-to-parent matching based on children's disabilities and, in some cases, other unique family situations. Most maintain ongoing contact with other groups worldwide. Unless otherwise noted, all services are provided free of charge. This symbol, ??, indicates an e-mail address. All international calls from the US or Canada Canada (kăn`ədə), independent nation (2001 pop. 30,007,094), 3,851,787 sq mi (9,976,128 sq km), N North America. Canada occupies all of North America N of the United States (and E of Alaska) except for Greenland and the French islands of require dialing 011 before the number. Please be aware of timezone differences when making any calls, particularly international ones. (Unless otherwise noted, telephone numbers are for voice only.) KEY TO SERVICES 1 Periodical/newsletter 2 Informational materials 3 Networking/matching 4 Referrals to local resources 5 Local chapters 6 National conferences 7 National advocacy efforts 8 Fund research 9 Maintain research registry The configuration database in all 32-bit versions of Windows that contains settings for the hardware and software in the PC it is installed in. The Registry is made up of the SYSTEM.DAT and USER.DAT files. Many settings previously stored in the WIN.INI and SYSTEM. |
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