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 about 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). 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 ), and 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 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, available for $45.00 including S&H from the EP Library as Item Number DP13110D). 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 on every other 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, []. (Unless otherwise indicated, all telephone numbers are for voice only.) 1-ss-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-ss-HYDROXYSTEROID DEHYDROGENASE DEFICIENCY See: Adrenal Disorders 45, X SYNDROME See: Turner's Syndrome; Albinism & Hypopigmentation 47,XYY; 47,XXY; 47,XXX SYNDROMES See: Klinefelter Syndrome A-BETA-LIPOPROTEINEMIA See: Tay-Sachs Disease ABDOMINAL MIGRAINE See: Cyclic Vomiting Syndrome ACHONDROPLASIA See: Growth Disorders ACID MALTASE DEFICIENCY See also: Glycogen Storage Diseases; Pompe Disease (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 1,2,6,8,9 ACIDEMIA, ISOVALERIC (IVA) See: Acidemia, Organic ACIDEMIA, METHYLMALONIC See: Acidemia, Organic ACIDEMIA, ORGANIC See also: Fatty Oxidation Disorders; 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 1,2,3,6,7,8 ACIDEMIA, PROPIONIC See: Acidemia, Organic ACOUSTIC NEUROMA See also: Balance Disorders & Dizziness; Brain Tumors; Hearing Impairments; Neurofibromatosis; Vestibular Disorders Acoustic Neuroma Association 600 Peachtree Pkwy, Ste. 108 Cumming, GA 30041 (770) 205-8211 (770) 205-0239 (fax) * anausa@aol.com http://www.anausa.org 1,2,4,5,6 Acoustic Neuroma Association of Canada PO Box 369 Edmonton, AB CAN T5J 2J6 (800) 561-2622 (Canada only) (780) 928-3384(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 DYSOSTOSIS, NAGER TYPE See: Nager & Miller Syndromes ACROMEGALY See: Multiple Endocrine Neoplasia I; Pituitary Disorders/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 * NADFMAIL@aol.com http://medhelp.org/www/nadf 1,2,3,4,5 ADRENOCORTICOTROPIC HORMONE DEFICIENCY See: Adrenal Disorders; Pituitary Disorders/Tumors ADRENOGENITAL SYNDROME See: Adrenal Disorders ADRENOLEUKODYSTROPHY 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 1,2,3,6,9 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 2,3,4,7,9 Aicardi Syndrome Newsletter, Inc. Denise Park Parsons Editor, Trustee 1510 Polo Fields Ct. Louisville, KY 40245 (502) 244-9152 * AICNews@aol.com http://www.Aicardi.com 1,2,6 AIDS See also: HIV/AIDS; Curriculum and Materials Development for HIV Disease; Healthcare Provider Training and Technical Assistance. CDC National STD and AIDS Hotlines Tanya Montoya, Information Coordinator PO Box 13827 Research Triangle Park, NC 27709 (800) 344-7432 (800) 227-8922 (800) 342-2437 (800) 344-7432 (Spanish) (800) 243-7889 (TDD) (919) 361-4855 (fax) * hivnet@ashastd.org http://www.ashastd.org http://www.iwannaknow.org 2,4 National Pediatric & Family HIV Resource Center Estella Ortega, PC Applications Specialist PO Box 1709 Newark, NJ 07101-1709 (973) 972-0410 (973) 972-0399 (fax) * ortegaes@umdnj.edu 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 1,2,3,4,6 ALANINURIA See: Lactic Acidosis; Acidemia, Organic ALBINISM & HYPOPIGMENTATION See also: Visual Impairments NOAH (National Organization for Albinism and Hypopigmentation) Michael McGowan President PO Box 959 E. Hampstead, NH 03826-0959 (800) 473-2310 (603) 887-6049 (phone/fax) * info@albinism.org http://www.albinism.org/ 2 Spanish materials ALBINISM See: Albinism & Hypopigmentation ALBINISM OCULAR See: Albinism & Hypopigmentation ALBINISM OCULOCUTANEOUS See: Albinism & Hypopigmentation ALBRIGHT SYNDROME See: Growth Disorders ALGONEURODYSTROPHY See: Reflex Sympathetic Dystrophy Syndrome ALL 4P- P+ SYNDROME See: Chromosome 4p ALL 4Q- Q+ RING 4 CHROMOSOME See: Chromosome 4p 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 PO Box 150760 San Rafael, CA 94915-0760 (415) 472-3780 (415) 472-3780 * info@naaf.org http://www.naaf.org 1,2,3,4,5,6,7,8,9 Spanish materials ALOPECIA UNIVERSALAONYCHODYSTROPHY-TOTAL VITILIGO See: Ectodermal Dysplasias; Vitiligo ALOPECIA-ANOSMIADEAFNESS-HYPOGONADISM See: Ectodermal Dysplasias ALOPECIAONYCHODYSPLASIA-HYPOHIDROSIS See: Ectodermal Dysplasias ALPHA-1-ANTITRYPSIN (AAT) DEFICIENCY See also: Liver Disorders; Lung Diseases Alpha-1 Antitrypsis Deficiency National Association 8120 Penn Ave. S Ste. 549 Minneapolis, MN 55431 (800) 521-3025 (952) 703-9975 (952) 703-9977 (fax) * info@alpha1.org http://www.alpha1.org 1,2,3,4,5,6,7,9 ALPHA-GALACYOSIDASE DEFICIENCY See: Fabry Disease ALPHA THALASSEMIA MENTAL RETARDATION SYNDROME, X-LINKED Alpha Thalassemia Mental Retardation Syndrome (ATR-X) Support Group http://www.groups.yahoo.com/ group/atr-x c/o International Rare Disease Support Network (IRDSN) David Hughes, President/Founder 3604 Hendvick Dr, Plano, TX 75074 (972) 423-6117 * Hughes.family@attbi.com http://www.raredisorders.com 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 AMELOCEREBROHYPHOHIDROTIC SYNDROME See: Ectodermal Dysplasias AMELOONYCHOHYPHOHIDROTIC 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) 2,3,4,5,7,9 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) * acainfo@amputeecoalition.org http://www.amputeecoalition.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 AMSTERDAM 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 and hyelodysplasia Association of Canada 22 Aikenhead Rd. Etobicoke, ON CAN M9R 273 (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) * aamdsoffice@aol.com http://www.aamds.org 1,2,3,5,6,8,9 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 1801 Willamette St, Ste 200 Eugene, OR 97401 (800) 828-4891 (family support only) (541) 687-4658 (541) 687-0548 (fax) * info@fanconi.org http://www.fanconi.org 1,2,3,4,5,6,7,8,9 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) 734-9267 (630) 655-0391 (fax) * info@angelman.org http://www.angelman.org 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 (403) 931-4237 (fax) * cass@cadvision.com http://www.angelmancanada. org 1,6 ANGIO-OSTEOHYPERTROPHY SYNDROME See: Klippel-Trenaunay Syndrome ANGIOKERATOMA CORPORIS DIFFUSUM See: Fabry Disease ANGIOMATOSIS RETINA See: Von Hippel-Lindau Syndrome ANIRIDIA See also: Visual Impairments, WAGR Syndrome Anradia Network PO Box 6444 Colchester C04 3XU UK (+44) 0777989624 * hannah@aniridia.org http://www.aniridia.org ANKYLOSING SPONDYLITIS, JUVENILE See: Arthritis ANOPHTHALMA See also: Visual Impairments International Children's Anophthalmia Network 5501 Old York Rd. Philadelphia, PA 19141 (800) 580-4226 (215) 456-2356 (fax) 1,2,3,4,6,9 ANORECTAL MALFORMATIONS See also: Intestinal Pseudo-Obstruction Syndrome Pull-Thru Network 2312 Savoy St. Hoover, AL 35226 (205) 978-2930 (203) 221-9212 * info@pullthru/.org http://www.pullthrough.org 1,2,3,4,9 ANOREXIA NERVOSA Includes bulimia nervosa and binge-eating disorder American Anorexia Bulimia Association, Inc. 165 W 46th St Ste 1108 New York, NY 10036 (212) 575-6200 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) * anad20@aol.com * AnadAdvocacy@aol.com 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 Penny Montgomery-West, Response Center Director 29 John St., #1103 New York, NY 10038 (800) 922-4622 (212) 267-2812 (fax) * naa@aphasia.org http://www.aphasia.org 1,2,5,6 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) 293-3150 (202) 293-3656 (fax) * asaa@sleepapnea.org http://sleepapnea.org 1,2,4 APRAXIA See also: Learning Disabilities C.H.E.R.A.B. Foundation, Inc. (Communication Help, Education, Research, Apraxia Base Foundation) Lisa Geng, President PO Box 8524. PSL, Florida 34952-8524 (772) 335-5135 * help@cherab.org http://www.apraxia.cc/ 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 STEN0SlS See: Hydrocephalus ARACHNODACTLY 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 PO Box 7669 Atlanta, GA 30357 (800) 283-7800 (404) 872-7100 (404) 872-9559 (fax) http://www.arthritis.org 1,2,3,4,5,6,7,8 Spanish materials Arthritis Society 393 University Ave., Ste. 1700 Toronto, ON CAN M5G 1E6 (800) 321-1433(Canada only) (416) 979-7228 (416) 979-8366 (fax) * nkent@arthritis.ca http://www.arthritis.ca 2,5,7,6 French materials National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse (NIAMS) 1 AMS Circle Bethesda, MD 20892-3675 (301) 495-4484 (877) 22-NIAMS (226-4267) (toll free) (301) 565-2966 (TDD) (301) 718-6366 (fax) http://www.nih.gov/niams/ 2,4 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 PARAYLSIS See: Guillain-Barre Syndrome ASPERGER'S DISORDER See: Autism ASPERGER SYNDROME See: Autism ASTHMA See: Asthma & Allergy ASTHMA & ALLERGY See also: Food Allergy; Latex Allergy,' Lung Diseases Allergy & Asthma Network Mothers of Asthmatics 2751 Prosperity Ave., Ste.150 Fairfax, VA 22031-4397 (800) 878-4403 (703) 641-9595 (703) 573-7794 (fax) * info@aanma.org http://www.aanma.org 1,2,3,4,7 Asthma and Allergy Foundation of America 1233 20th St., NW, Ste. 402 Washington, DC 20036 (800) 727-8462 (202) 466-7643 (202) 466-8940 (fax) * info@aafa.org http://www.aafa.org 1,2,3,4,5,6,7,6 Spanish materials Asthma Society of Canada 130 Bridgeland Ave., Ste. 425 Toronto, ON CAN M6A 1Z4 (800) 787-3880 (416) 787-4050 (416) 787-5807 (fax) * info@asthma.ca http://www.asthma.ca 1,2,6 patient education ATAXIA See also: Friedreich Ataxia 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 Beach, FL 33442 (800) 543-5728 (954) 481-6611 (954) 725-1153 (fax) * info@atcp.org http://www.atcp.org 1,2,3,4,6,8,9 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 58 Prince St. Needham, MA 02492 (781) 455-9895 (781) 444-5466 (fax) * adin@gis.net http://www.addinfonetwork.org 2,3,4,5,6,9 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://wwwmembers, tripod.co m/~chaddcanada/index.html 1,2,3,5,6,9 Spanish materials CHADD: Children and Adults with Attention Deficit Hyperactivity 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 1,2,3,5,6,7,9 Spanish materials National ADD Association 1788 2nd St., Ste. 200 Highland Pk, IL 60035 (847) 432-ADDA (2332) * mail@add.org http://www.add.org 1,2,4,6 ATTENUATED ADENOMATOUS POLYPOSIS COLI See: Hereditary Colon Cancer AUDITORY NEUROPATHY See: Kernicterus AURICULO-OCULO-VERTEBRAL SYNDROME See: Goldenhar Syndrome AUTISM See also: Autism and Sensory Impairments; Purine Metabolic Disorders; Mental Retardation; Asperger Syndrome; PDD Fetal Alcohol Syndrome/Effect; Heart Disorders Asperger Syndrome Coalition of the United States PO Box 351268 Jacksonville, FL 32235-1268 (904) 745-6741 (866) 4-ASPRGR (427-7747) * 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 (781) 648-1813 (phone/fax) http://www.autcom.org 1,2,6,7 Autism Research Institute Mallie Odle, Assistant to Director 4182 Adams Ave. San Diego, CA 92116 (619) 281-7165 (619) 563-6840 (fax) 1,2,4,9 Autism Resources Chapel Hill TEACH Center 100 Renee Lynn Ct. Carrboro, NC 27510 (919) 966-5156 http ://www.unc.edu/~cory/ autism-info 2,3,4,7,9 Autism Society of America 7910 Woodmont Ave., Ste 300 Bethesda, MD 20814-3067 (800) 3AUTISM (328-8476) (301) 657-0869 (fax) http://www.autism-society.org/ 5,7,9 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 46308 (219) 662-1311 (219) 662-0638 (fax) * chart@netnitco.net http://www.maapservices.org 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 material The New Jersey Center for Outreach and Services for the Autism Community Inc. (COSAC) Rebecca Hernadez, Director of Communications 1450 Parkside Ave., Ste. 22 Ewing, NJ 08638 (609) 883-8100 (609) 883-5509 (fax) * information@njcosac.org http://www.njcosac.org 2,7 AUTISM AND SENSORY IMPAIRMENTS See also: Hearing Impairments; Visual Impairments Autism Network for Hearing and Visually Impaired Persons c/o Dolores and Alan Bartel 7510 Oceanfront Ave. Virginia Beach, VA 23451 (757) 428-9036 (757) 428-0019 (fax) 2,6 CAN (Cure Autism Now) 5455 Wilshire 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 at Indiana University-Bloomington 2853 E. Tenth 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 1,2,4,6 The National Alliance for Autism Research 99 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/ asperger 2,3 TEACCH 310 Medical School Wing E University of North Carolina/CB #7180 Chapel Hill, NC 27599-7180 (919) 966-2174 (919) 966-4127 (fax) * teacch@unc.edu http://www.teacch.com 2,4,5,6,9 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. wspws 2,4 AUTOIMMUNE DISORDERS See also: Immune Disorders; Vitiligo American Autoimmune Related Diseases Association 22100 Gratiot Ave. East Detroit, MI 48021 (800) 598-4668 (586) 776-3900 (586) 776-3903 (fax) * aarda@aol.com http://www.aarda.org 1,2,4,5 (Local Contacts),6,7,8 AUTOIMMUNE MYOCARDITIS See: Autoimmune Disorders AUTOIMMUNE RHEUMATIC DISEASES See: Scleroderma B12 METABOLISM, INBORN ERROR OF See: Cobalamin (B12) Defiency 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/TDD) (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 BARTH SYNDROME See also: Heart Disorders; Neutropenia; Short Stature The Barth Syndrome Foundation, Inc. PO Box 974 Perry, FL 32348 (850) 223-1128 (402) 421-1926 * postmaster@barthsyndrome.org/ http://www.barthsyndrome.org BATTEN DISEASE Batten Disease Support and Research Association 120 Humphries Dr., Ste 2 Reynoldsburg, OH 43068 (800) 448-4570 (740) 927-4298 * bdsra1@bdsra.com http://www.bdsra.org 1,2,3,4,5,6,7,8,9 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 (800) 400-8968 * 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) * edith.docktee@omr.state.ny.us 2,4,5,9; 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.beckwith-wiedemann.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 2,3,4,8,9 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 & 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@bmtinfonet.org http://wwwbmtinfonet.org 1,2,3,9; legal referral for insurance problems BONE TUMOR-EPIDERMOID CYST-POLYPOSIS See: Colon Cancer, Hereditary; 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) * IFFGD@iffgd.org http://www.iffgd.org 1,2,4,6,7,9 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 of America Chris Fuller, Public Relations Specialist 105 N. Alfred St. Alexandria, VA 22314 (703) 236-6000 (703) 236-6001 (fax) * publicrelations@biausa.org http://www.biausa.org 5,7,9 Coma Recovery Association, Inc. Paulette Demato, Program Coordinator 807 Carman Ave. Westbury, NY 11590 (516) 997-1826 (516) 997-1613 (fax) * crainfo@comarecovery.org http://www.comarecovery.org 1,2,7 BRAIN STEM MALFORMATIONS See: Arnold-Chiari Malformation; Joubert Syndrome; Syringomyelia BRAIN TUMORS See also: Acoustic Neuroma; Brain Injury; Cancer; Epilepsy; Pituitary 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 1,2,3,4,6,7,8 Spanish materials Brain Tumor Foundation for Children, Inc. 1835 Savoy Dr., Ste. 316 Atlanta, GA 30341 (770) 458-5554 (770) 458-5467 (fax) * btfc@btfc.org http://www.braintumour.ca 1,2,3,4,5,6,8 materials Brain Tumor Foundation of Canada 650 Waterloo St., Ste. 100 CAN N6B 2R4 London, ON (800) 265-5106 (519) 642-7755 (519) 642-7192 (fax) * info@btfc.org 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 1,2,3,6,7,8 Children's Brain Tumor Foundation 274 Madison Ave., Ste. 1301 New York, NY 10016 (212) 448-9494 (866) CBT-HOPE (228-4673) (212) 448-1022 (fax) * cbtfny@aol.com http://www.cbtf.org 1,2,3,4 Referrals to national resources 6,7,8 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 Spinal Cord Tumors, Seminars 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 1840 Wealthy SE 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 also: Leukodystrophy; Tay-Sachs Disease The Canavan Research Foundation Fairwood Professional Building New Fairfield, CT 06812 (203) 746-2436 (203) 746-3205 (fax) * canavanresearch@aol.com http://www.canavan.org/ 2,3,7,6,9 CANCER See also: Bone Marrow Transplant; Brain Tumors; Colon Cancer, Hereditary; Leukemia; Lymphedema; 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 CAN MdV 3B1 Toronto, ON (416) 961-7223 (416) 961-4189 (fax) * ccs@cancer.ca http://www.cancer.ca 1,2,3,4,5,7,8 French materials Candlelighters Childhood Cancer Foundation 3910 Warner SL 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 CAN M4P 1G8 Toronto, ON (800) 363-1062 (Canada only) (416) 489-6440 (416) 489-9812 (fax) * staff@candlelighters.ca http://www.candlelighters.ca 1,2,3,4,5,6,7,6 French materials CANCER, BRAIN See: Brain Tumors CANCER, GASTROINTESTINAL See: Colon Cancer, Hereditary; Polyposis CARBAMYL PHOSPHATE SYNTHETASE (CPS) DEFICIENCY See: Urea Cycle Disorders CARDIAC DISORDERS See: Heart Disorders CARDIO-FAClO-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 Disorders; Mitochondrial Disorders; Muscular Dystrophy CARPENTER SYNDROME See: Craniofacial Disorders CARTILAGE-HAIR HYPOPLASIA See: Dwarfism; Growth Disorders; Short Stature CARTILAGENOUS 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 5170 Dixie Rd, Ste 204 CAN L4W 1E3 Mississauga, ON (800) 363-7296 (Canada only) (905) 507-6208 (905) 507-4673 (fax) celiac@look.ca http://www.celiac.ca 1,2,4,5,6,7,6 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 1,2,3,4,7,9 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 CEREBELLOOCULOCUTANEOUS TELANGIECTASIA See: Ataxia Telangiectasia CEREBELLORETINAL HEMANGIOBLASTOMATOSlS See: Von Hippel-Lindau Syndrome CEREBRAL GIGANTISM See: Sotos Syndrome CEREBRAL PALSY Ontario Federation for Cerebral Palsy 1630 Lawrence Ave. W., Ste. 104 CAN M6L 1C5 Toronto, ON (416) 244-9686 (877) 244-9686 (416) 244-6543 (fax) * ofcp@ofcp.on.ca http://www.ofcp.on.ca 1,2,3,4,6 Provincial conferences, 7. Provincial Advocacy efforts,9 French materials National Brachial Plexus/Erb's Palsy Association, Inc. Brenda Copeland-Moore P.O. Box 23 Larsen, WI 54947 (920) 836-2151 (209) 644-5813 (fax) * info@nbpepa.org http://www.nbpepa.org United Cerebral Palsy Associations 1660 L St. NW, Ste. 700 Washington, DC 20036-5602 (800) 872-5827 (202) 776-0406 (202) 973-7197 (TDD) (202) 776-0414 (fax) * national@ucp.org http://www.ucp.org 1,2,3,4,5,6,7,8 Spanish materials, provides direct services through 130 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; Dejerine-Landouzy Deafness Research Foundation 1225 1 St., Ste. 500 Washington, DC 20005 (202) 289-5850 (voice/TDD): http://www.hearinghealth.net 1,2,4,7,6,9 Gallaudet University Office of Public Relations 800 Florida Ave., NE Washington, DC 20002-3695 (202) 651-5000 (202) 651-5608 (TDD) (202) 651-5704 (fax) * public.relations@gallaudet.edu http://www.gallaudet.edu HEAR Now: The Us Program of the Starkey Hearing Foundation 4248 Park Glen Rd. Minneapolis MN 55416 (800) 648-4327 (952) 828-6946 (fax) * nonprofit@starkey.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 Fl. Los Angeles, CA 90057 (800) 352-8888 (voice/TDD) (800) 287-4763 (voice/TDD) Canada only) (213) 484-2642 (213) 483-4431 (TDD) (213) 483-8789 (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@nad.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) 651-5031 (202) 651-5052 (TDD) (202) 651-5044 (fax) * Clearinghouse.Infotogo@ gallaudet.edu http://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) 928-2500 (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.learningtolisten.org 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 See also: Developmental Disabilities; Autism; Down Syndrome American Heart Association 7272 Greenville Ave. Dallas, TX 75231-4596 (800) 242-8721 (214) 706-1179 (214) 706-2139 (fax) * inquires@heart.org http://www.americanheart.org 2,5,6,7 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@compuserv.com * myer106w@cdc.gov http://www.csun.edu/ ~hfmth006/chaser 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 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) * kdswhrit@execpc.com 2,3,4,7,9 HEMANGIOMA See Craniofacial Disorders HEMIDYSPLASIA, UNILATERAL See: Ichthyosis HEMIFACIAL MICROSOMIA See: Goldenhar Syndrome HEMIHYPERTROPHY See: Beckwith-Wiedeman Syndrome HEMIMEGALENCEPHALY Hemimegalencephaly Support Group Sue Cowper 40 Olympic Ave. Shepparton 3630 Victoria, Australia * hmegroup@cv.quik.com.au http://www.cv.quik.com.au/h megroup/ HEMIPLEGIA, ALTERNATING See also: Epilepsy; Seizure Disorders Alternating Hemiplegia of Childhood Foundation Lynn Egan, Vice President, Parent Support 239 Nevada St. Redwood City, CA 94062 (650) 365-5798 (phone/fax) * laegan6@sbcglobal.net http://www.ahckids.org 1 HEMISPHERECTOMY 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 116W. 32nd St., 11th Fl. New York, NY 10001-3212 (800) 424-2639 (212) 328-3700 (212) 328-3777 (fax) * info@hemophilia.org http://www.hemophilia.org 1,2,4,5,6,7,6 Spanish materials World Federation of Hemophilia 1425 Rene Levesque Blvd. W. Ste. 1010 Montreal, QC CAN H3G 1T7 (514) 875-7944 (514) 875-8916 (fax) * wfh@wfh.org http://www.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 International, Inc. PO Box 8087 New Haven, CT 06530 (800) 448-6389 (410) 357-9931 (fax) * 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 HEREDITARY NONPOLYPOSIS COLORECTAL CANCER See: Colon Cancer, Hereditary HERMANSKY-PUDLAK SYNDROME See also: Albinism & Hypopigmentation; Visual Impairments Hermansky-Pudlak Syndrome Network Inc. One South Rd. Oyster Bay, NY 11771 (800) 789-9477 (516) 922-3440 (516) 922-4022 (fax) * hpsnet@worldnet.att.net http://www.hpsnetwork.org 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 Cheryl Chase, Executive Director PO Box 301 Petaluma, CA 94953 (707) 636-0420 (707).636-0419 (fax) * info@isna.org http://www.isna.org 7 HERNIA, DIAPHRAGMATIC CHERUBS The Association Of Congenital Diaphragmatic Hernia Research, Advocacy, and Support. 1109 Williamsboro St. Oxford, NC 27565 (919) 693-8158 (866) 603-1944 (707) 924-1114 (fax) * info@cherubs-cdh.org http://www.cherubs-cdh.org 1,2,3,4,5,6,7,9 HERS DISEASE See: Glycogen Storage Diseases; Muscular Dystrophy HIRSCHSPRUNG DISEASE See: Intestinal Pseudo-Obstruction Syndrome HISTIOCYT0SIS See also: Growth Disorders; Liver Disorders; Lung Diseases; Pituitary Tumors Histiocytosis Association of America 72 E. Holly Ave., Ste. 101 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: 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 Dallas, TX 75219 (214) 559-8411 (214) 559-8383 (fax) * hpe@tsrh.org http://hpe.stanford.edu 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-WEBERPEUTZ SYNDROME See: Colon Cancer, Hereditary; Polyposis HYDROCEPHALUS The Guardians of Hydrocephalus Research Foundation National Headquarters 2618 Ave. Z Brooklyn, NY 11235 (718) 743-4473 (718) 743-1171 (fax) * GHRF2618@aol.com http://ghrf.homestead.com/ ghrf.html 1,2,3,4,8 Hydrocephalus Association 870 Market St., Ste. 705 San Francisco, CA 94102 (415) 732-7040 (415) 732-7044 (fax) * hydroassoc@aol.com http://www.hydroassoc.org 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) * dhydrobuff@aol.com 1,2,3,4,5,6 National Hydrocephalus Foundation 12413 Centralia Rd. Lakewood, CA 90715-1623 (562) 402-3523 (562) 924-6666 (fax) * hydrobrat@earthlink.net http://www.nhfonline.org 1,2,3,4,5,7 videos and cassettes available HYDROCEPHALUS, OBSTRUCTIVE See: Dandy-Walker Syndrome HYPERAMMONEMIA See: Urea Cycle Disorders HYPERBILIRUBINEMIA See: Kernicterus 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 Canadian Hyperlexia Association 300 John St. PO Box 87673 Thornhill, ON CAN L3T 7R3 (905) 886-9163 (905) 886-4624 (fax) * cha@ican.net http://www.home.ican.net/~cha 1,2,3,4,5 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 Hypoparathyroidism Association, Inc. 2835 Salmon St. Idaho Fall, ID 83406 (208) 524-3857 (208) 524-2619 (fax) http://www.hypoparathyroidism .org 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 Ann Armstrong-Dailey, Founding Director 901 N. Pitt St. Ste 230 Alexandria, VA 22314 (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 40 W. Chesapeake Ave., Ste. 308 Towson, MD 21204 (800) 296-4433 (410) 321-6647 (410) 321-9165 (fax) * idf@primaryimmune.org http://www.primaryimmune.org 1,2,4,5,6,7,8,9 Spanish materials IMMUNOLOGIC DISEASES See: Granulomatous Disease, Chronic IMPERFORATE ANUS See: Anorectal Malformations INCLUSION BODY MYOSTISIS See: Immune Disorders INCONTINENCE National Association For Continence Nancy Muller, Executive Director PO Box 8310 Spartanburg, SC 29305 (864) 579-7900 (864) 579-7902 (fax) * memberservices@nafc.org http://www.nafc.org 2,7 Simon Foundation for Continence PO Box 835F 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 materials INCONTINENTIA PIGMENTI See also: Ectodermal Dysplasias National Incontinentia Pigment/Foundation 30 E. 72th St., 16th Fl. New York, NY 10021 (212) 452-1231 (212) 452-1406 (fax) * ipif@ipif.org http://imgen.bcm.tmc.edu/nipf 1,2,3,4,5,8 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: Colon Cancer, Hereditary; Polyposis INTESTINAL POLYPOSISCUTANEOUS PIGMENTATION SYNDROME See: Colon Cancer, Hereditary; Polyposis INTESTINAL PSEUDO-OBSTRUCTION SYNDROME International Foundation For Functional Gastrointestinal Disorders (IFFGD) PO Box 17084 Milwaukee, WI 53217-8076 (414) 964-1799 (414) 964-7176 (fax) *: aanastas@iffgd.org http://www.iffgd.org 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: Colon Cancer, Hereditary; 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 1931 S, Carlinda Columbia, MD 21046 (410) 997-8094 * joubertduquette@comcast.net 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; Ollier 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 KERNICTERUS See also: Cerebral Palsy Parents of Infants and Children with Kernicterus (PICK) 517 Brentwood Dr. Birmingham, AL 35226 Contact: Karen Dixon (205) 979-2021 * ktdixon1@home.com http://www.bilirubin.net 1,2,3,4,6,7,6,9 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; Oxalosis & Hyperoxaluria Hereditary Nephritis Foundation 1390 W. 6690 S., #202H Murray, UT 84123 (801) 262-5901 (phone/fax) http://www.cc.utah.edu/~cla62 02/HNF.htm 1,3,4 KIDNEY DISORDERS See also: Cystinosis; Kidney Diseases, Hereditary; Oxalosis & Hyperoxaluria American Association of Kidney Patients 106 S. Ashley Dr., Ste. 315 Tampa, FL 33602 (800) 749-2257 (813) 636-8122 (813) 223-0001 (fax) * info@aakp.org http://www.aakp.org 1,2,4,5,6,7,8 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.akfinc.org 1,2,6,8 Spanish materials, financial assistance for treatment-related expenses Child & Youth Clinical Trials Network (CYCTN) Spencer Russ, Acting Director Cheo-Research Institute 401 Smith Rd. Ottawa, ON CAN K1H 8L1 (613) 737-4098 (613) 738-4800 (fax) 2,4 Kidney Foundation of Canada 300-5165 Sherbrooke St. W. Montreal, QC CAN H4A IT6 (514) 369-4806 (514) 369-2472 (fax) * kathleen@kid ney. ca http://www.kidney.ca 2,3,4,5,8 French/Chinese/ Punjabi materials National Kidney Foundation 30 E. 33rd St., Ste. 1100. New York, NY 10016 (800) 622-9010 (212) 889-2210 (212) 689-9261 (fax) http://www.kidney.org 1,2,4,5,6,7,8 PKD Foundation Dave Switzer, Marketing/Public Relations Director 4901 Main St., Ste. 200 Kansas City, MO 64112-2634 (800) 753-2873 (816) 931-8655 (fax) * pkdcure@.pkdcure.org http://www.pkdcure.org 7,9 KIDNEY STONES See: Cystinuria KINKY HAIR DISEASE See: Menkes Disease KIRGHIZIAN DERMATOOSTEOLYSIS See: Ectodermal Dysplasias KLINEFELTER 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. 47, XXX and 47, XYY PO Box 2119 Loomis, CA 95650 (916) 660-1599 (888) 999-9428 (toll free line) (916) 660-1899 (fax) * info@genetic http://www.genetic.org 1,2,3,4,5,6,7,8,9 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 (652) 925-2596 * jvessey@qwest.net http://www.k-t.org 1,2,3,4,5,6,9 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 PARALYSIS See: Guillain-Barre Syndrome KYPHOSIS See: Scoliosis LACTATE DEHYDROGENASE DEFICIENCY See: Muscular Dystrophy LACTIC ACIDOSIS See also: Glutaric Aciduria, Type I; Metabolic Disorders Congenital Lactic Acidosis Family 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 PARALYSIS See: Guillain-Barre Syndrome LANGER-GIEDION SYNDROME See: Ectodermal Dysplasias; Exostoses, Multiple Hereditary LANGERHANS CELL HISTIOCYTOSIS See: Histiocytosis 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) 11435 Crowhill Dr. Owings Mills, MD 21117 (888) 394-3937 (toll free) (800) 683-5551 (TDD) (410) 569-0150 (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 Jane Browning Executive Director 4156 Library Rd. Pittsburgh, PA 15234 (412) 341-1515 (412) 344-0224 (fax) * linfo@ldaamerica.org http://www.ldanatl.org 2,4, The Learning Disabilities Association of Canada (National Office) 323 Chapel St. 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 City 27 W. 20 St., Rm 303 New York, NY 10011 (212) 645-6730 (212) 924-8896 (fax) * lldanyc@earthlink.net 2,4 National Center for Learning Disabilities Pazit Algazi Communications Marketing Coordinator 381 Park Ave. S, Ste 1401 New York, NY 10016 (212) 545-7510 (212) 545-9665 (fax) http://www.ld.org 9 Parents of Gifted/LD Students 2420 Eccleston St. Silver Spring, MD 20902-4925 (301) 986-1422 (301) 924-9304 (fax) * jilmeyers@aol.com http://www.geocities.com/athe ns/1105/gtld.htm 1,2,3,4,5 Resource for Children with Special Needs, Inc. 116 E. 16th St., 5th Fl. New York, NY 10003 (212) 677-4650 (212) 254-4020 (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 for Research in Developmental Disabilities PO Box 339 Peapack, NJ 07977 (908) 234-0618 (908) 234-0963 (fax) * research@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: Maureen E. Thornton 936 The East Mall Toronto, ON CAN M9B 6J9 (800) 268-2144 (Canada only) (416) 661-2875 (416) 661-3840 (fax) * lrfc@lrfc.org http://www.leukemia.ca 1,2,4,5,8 Leukemia & Lymphoma Society 1311 Mamaroneck Ave, 3rd Fl. White Plains, NY 10605 (800) 955-4572 (914) 949-5213 (914) 949-6691 (fax) http://www.leukemia-lymphoma.org 1,2,3,4,5,6,7,8 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@tbcnet.com http://www.ulf.org 1,2,3,4,6,8,9 Spanish/French materials LEUKODYSTROPHY, METACHROMATIC See: Leukodystrophy, Tay-Sachs Disease LIMB DIFFERENCES See: Limb Disorders LIMB DISORDERS See also: Amputation Superkids Peter McLoughlin 60 Clyde St. Newton, MA 02460-2250 http://www.super-kids.org 1,3 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 * gmcafee@ptd.net http://www.home.ptd.net/~ifsn LISSENCEPHALY See also: Epilepsy Lissencephaly Network, Inc. 10408 Bitterroot Ct. Fort Wayne, IN 46804 (219) 432-4310 (voice/fax) * ltal@is2.nyu.edu http://www.lissencephaly.org 1,2,3,4,9 The Lissencephaly 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 (465-4837), (888)4-HEP-ABC (443-7222), (212) 668-1000, (212) 483-8179 (fax) * webmail@liverfoundation.org http://www.liverfoundation.org 1,2,4,5,7,6,9 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 Q-T SYNDROME See also: Heart Disorders International Long Q-T Syndrome Registry Jennifer Robinson University of Rochester Med Ctr, Box 653 Rochester, NY 14642-8653 (716) 275-5391 (716) 473-2751 (fax) http://www.longqt.org/ longqtreg.html 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@sads.org http://www.sads.org 1,2,3,4.6,8,9 Spanish materials LORDOSIS See: Scoliosis LOW VISION See: Visual Impairments 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 61 Broadway, 6th Fl. New York, NY 10006 (800) LUNG-USA (586-4872) (212) 315-8700 (212) 265-5642 (fax) (212) 315-8872 (fax) * info@lungusa.org http://www.lungusa.org 2,4,5,6,7,6 Spanish materials Canadian Lung Association Attn: Deirdre Freiheit 3 Raymond St Ste 300 Ottowa, ON CAN K1R 1A3 (613) 564-6411 (613) 747-7430 (fax) * info@lung.ca http://www.lung.ca 2,4,5,6,7 LUPUS ERYTHEMATOSIS Lupus Foundation of America Duane Peters, Communications and Advocacy 1300 Piccard Dr., Ste. 200 Rockville, MD 20850 (888) 385-8787 (301) 670-9292 (301) 670-9486 (fax) * info@lupus.org http://www.lupus.org 5,8 9 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 8 Crown Steel Dr., Ste. 209 Markham ON Canada L3R 9X8 (905) 513-0004 (905) 513-9516 (fax) * lupuscanada@bellnet.ca http://www.lupuscanada.org 2,4,5,6,7,8 French materials LYME DISEASE American Lyme Disease Foundation, Inc. Mill Pond Offices 293 Rt. 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 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 See also: elephantiasis genetic disorders cancer Lymphedema NAT'L LYMPHEDEMA NETWORK Saskia R.J. Thiadens, RN Executive Director 1611 Telegraph Ave., Ste. 1111 Oakland, CA 94612-2138 (510) 208-3200 (510) 208-3110 (fax) * nln@lymphnet.org http://www.lymphnet.org 2,4 LYMPHOHISTIOCYTOSIS, FAMILIAL ERYTHROPHAGOCYTIC See: Histiocytosis LYMPHOHISTIOCYTOSIS, HEMOPHAGOCYTIC See: Histiocytosis LYMPHOHISTIOCYTOSIS, MALIGNANT See: Cancer; Histiocytosis LYMPHOMA See: Leukemia LYSOSOMAL STORAGE DISEASES See: Fabry Disease; Gaucher Disease; Mucopolysaccharidosis, Niemann-Pick Disease; Pompe Disease; Tay-Sachs Disease MACULAR DEGENERATION See: Retinitis Pigmentosa MACULAR DISEASES See also: Retinitis Pigmentosa; Usher Syndrome; Visual Impairments Association for Macular Diseases 210 E. 64th St. New York, NY 10021 (212) 605-3777 (212) 605-3795 (fax) * macula@macula.org http://www.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 Macular Degeneration International 6700 N. Oracle Rd, Ste. 505 Tucson, AZ 85704 (800) 393-7634 (520) 797-2525 (520) 797-8018 (fax) * info@macular-degeneration.org http://www.maculardegeneration.org 1,2,3,4,6,8 MACULAR DYSTROPHIES, JUVENILE See: Macular Diseases MAFFUCCI SYNDROME See: Cancer; Ollier Disease MALE SEX CHROMOSOME DISORDERS See: Klinefelter Syndrome MALIGNANT HYPERTHERMIA Malignant Hyperthermia Assocation Carole Elliott, Administrator 200 Elizabeth St., Rm EC11-307 CCRW, Rm. 2-834 Toronto, ON CAN M5G 2C4 (416) 340-3238 (416) 340-4960 (fax) * carole.elliott@uhn.on.ca http://www.mhacanada.org 1,2 Malignant Hyperthermia Association of the United States 39 E. State St. PO Box 1069 Sherburne, NY 13460 (800) 644-9737, (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: Metabolic Disorders Maple Syrup Urine Disease Family Support Group Joyce Brubacher 24806 SR119 Goshen, IN 46526 (574) 862-2992 * msud-support@ characterlink.net http://www.msud-support.org 1,2,3,4,6,7,8 MARDEN-WALKER SYNDROME See: Cleft Palate; Connective Tissue Disorders; Growth Disorders MARFAN SYNDROME See also: Connective Tissue Disorders; Heart Disorders; Scoliosis Canadian Marfan Association Laura Libralesso Executive Director Centre Plaza Postal Outlet 128 Queen St., S. PO Box 42257 Mississauga, ON Canada LSM 420 (905) 826-3223 (905) 826-2125 (fax) * info@marfan.ca http://www.marfan.ca 2,9 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://ww.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 * BillA@Mastocytosis.com 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 6645 W. North Ave. Oak Park, IL 60302 (800) 362-4423 (708) 383-0808 (708) 383-0899 (fax) * mary@magicfoundation.org http://www.magicfoundation.org 1,2,3,4,6 Spanish materials, pen pal program for children MEDITERRANEAN ANEMIA See: Cooley Anemia MEDIUM-CHAIN ACYL-COA DEHYDROGENASE DEFICIENCY (MCAD) See: Fatty Oxidation Disorders MEDULLOBLASTOMA, HEREDITARY See: Brain Tumors MEERKEREN-EHLERS-DANLOS SYNDROME See: Ehlers-Danlos Syndrome MEIGE DISEASE See: Lymphedema MELANOLEUCODERMA ECTODERMAL DYSPLASIAS See: Colon Cancer, Hereditary; 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 Family Network on Disabilities of Florida, Inc. Jan LaBelle,Executive Director 2735 Whitney Rd. Clearwater, FL 33760 (813) 523-1130 (813) 523-8687 (fax) * fnd@fndfl.org http://www.fndfl.org 2 Federation of Families for Children's Mental Health Barbara Huff, Executive Director 1101 King St., Ste. 420 Alexandria, VA 22314 (703) 684-7710 (703) 836-1040 (fax) * ffcmh@ff.cmh.org http://www.ffcmh.org 1,2,3,4,5,6,7 Spanish material Mental Health Association of Colorado 6795 E. Tennessee Ave., Ste. 425 Denver, CO 80224 (303) 377-3040 (303) 377-4920 (fax) http://www.MHAcolorado.org 1,2,4 National Alliance for the Mentally III Colonial Pl. 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 2001 Beauregard St., 12th Fl. Alexandria, VA 22311 (800) 969-6642 (703) 684-5968 (fax) * 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 Parents & Children Coping Together-PACCT PO Box 26691 Richmond, VA 23261-6691 (800) 477-0946 (804) 559-6833 (804) 559-6835 (fax) * pacct@richmond.infi.net The Parent Connection PO Box 0 Santa Fe, TX 77510 (800) 839-8876 (409) 756-8321 (409) 925-7773 (fax) Utah Parent Center 2290 E. 4500 S., Ste. 110 Salt Lake City, UT 84117 (800) 468-1160 (UT only) (801) 272-1051 (801) 272-8907 (fax) * upc@inconnect.com MENTAL RETARDATION See also: Mental Illness; Mental Retardation/Mental Illness; Down Syndrome; Cerebral Palsy; Autism 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--Dallas Michelle M. Lynch, Habilitative Specialist/Case Manager 2245 Midway Rd., #300 Carrolton, TX 75006 (972) 866-9989 (972) 991-0834(fax) * donahue@bethphage.org http://www.beth phage.org 4,5 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 The Roeher Institute Roslyn Ward, Manager, Information Services Kinsmen Bldg., York University, 4700 Keele St. Toronto, ON CAN M3J 1P3 (416) 661-9611 (416) 661-5701 (fax) * info@roeher.ca http://www.cacl.ca 1,9 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 Roiling 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 Retardation 444 N Capitol St., Ste. 846 Washington, DC 20001 (800) 424-3688 (202) 387-1968 (202)387-2193 (fax) * anam@aamr.org http://www.aamr.org 1,2,4,5,6 Developmental Disabilities Nurses Association (DDNA) 1733 H St., Ste. 330 PMB 1214 Blaine, WA 98230 (800) 888-6733 (360) 322-2280 (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 (845) 331-4569 (fax) * thenadd@aoLcom http://www.thenadd.org 1,2,3,4,5,6,7 National, informational, and Regional Conferences' MERRF SYNDROME See: Myoclonus; Mitochondrial Disorders METABOLIC DISORDERS See also: Acidemia, Organic; Galactosemia; Lactic Acidosis; Maple Syrup Urine Disease; Neurotransmitter Diseases, Pediatric; Niemann-Pick Disease; Phenylketonuria (PKU) Cobalamin (B12) Defiency Climb The Quadrangle Crewe Hall Climb Bldg. 176 Nantwich Rd. Crewe, CW2 6BG UK (44)870700326 * info@climb.org.uk http://www.climb.org.uk 1,2,3,4 (in UK)5,6,7,8,9, 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 Connecticut 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 233 Park Ave. S New York, NY 10003 (212) 353-8353 (212) 254-3518 (fax) * NY639@modimes.org http://www.modimes.org 2,5,7,8 National Institute of Neurological Disorders & Stroke (NINDS) PO Box 5801 Bethesda, MD 20824 (800) 352-9424 (301) 468-5981 * braininfo@ninds.nih.gov http://www.ninds.nih.gov 2,9 MICROPHTHALMIA See: Anophthalmia; Visual Impairments MICROSOMIA, HEMIFACIAL See: Craniofacial Disorders; Goldenhar Syndrome MICROTIA See: Craniofacial Disorders MIGRAINES See Hemiplegia, Alternating 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: Lymphedema MITOCHONDRIAL DISORDERS United Mitochondrial Disease Foundation Dr. Georgette H. Demes 8085 Saltsburg Rd., Ste. 201 Pittsburgh, PA 15239 (412) 793-8077 (412) 793-6477 (fax) * info@umdf.org http://www.umdf.org 9 Muscular Dystrophy Association Bob Mackle: Director of Public Information 3300 E. Sunrise Dr. Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-5300 (fax) * mda@mdausa.org http://www.mdausa.org http://www.mdaenespanol.org 2,3,4,5,8,9 Muscular Dystrophy Family Foundation, Inc. 2330 N. Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) (317) 923-6334 (fax) * mdff@mdff.org http://www.mdff.org MITOCHONDRIAL MYOPATHY See: Mitochondrial Disorders; Muscular Dystrophy, Dejerine-Landouzy MOEBIUS SYNDROME See also: Craniofacial Disorders; Limb Disorders The Moebius Syndrome Foundation PO Box 147 Pilot Grove, MO 65276-0147 (660) 834-3406 (660) 834-3407 (fax) * vmccarrell@mid.mo-net www.moebiussyndrome.com The Moebius Syndrome News PO Box 20354 Oakland, CA 94620-0354 (510) 835-1318 moebiusca@aol.com Moebius Syndrome Support Group 38883 Fox Holm Dr. Palmdale, CA 93551 (805) 267-2570 (voice/fax) * lorit@netport.com http://www.wincom.net/moe bius 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 1,2,34,5,7,8,9 MUCOPOLYSACCHARIDOSIS See also: Metabolic Disorders; Tay-Sachs Disease The National Mucopolysaccharidosis (MPS) Society 45 Packard Dr. Bangor, ME 04401 (207) 947-1445 (207) 990-3074 (fax) * info@mpssociety.org http://www.mpssociety.org 1,2,3,4,5,6,8,9 Spanish materials Little People of America National Headquarters Box 745 Lubbock, Texas 79408 (888) LPA-2001 (572-2001) (voice/fax; call first) (806) 797-8830 (voice/fax; call first) Engl./Span. * LPADataBase@juno.com http://www.lpaonline.org 1,2,3,5,6 Spanish materials MUCOSULFATIDOSIS See: Hearing Impairments; Ichthyosis; Leukodystrophy; Tay-Sachs Disease MULTIPLE CARBOXYLASE DEFICIENCY See: Metabolic Disorders MULTIPLE ENDOCRINE NEOPLASlA I See also: Adrenal Disorders; Diabetes Mellitus; Thyroid Disorders Multiple Endocrine Neoplasia I Mrs. Cathy McMillan-Fitch Box 100 Meota, SK CAN SOM 1X0 (306) 892-2080 (voice/fax) * hockey_freak99@hotmail.com http://www.mensociety.com 1,2,3 MULTIPLE HEREDITARY EXOSTOSlS See: Ollier's disease MULTIPLE SCLEROSIS See also: Spinal Cord Injuries 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.ca 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 DISORDERS See: Freeman-Sheldon Syndrome MUSCULAR DYSTROPHY See also: Duchenne Muscular Dystrophy; Muscular Dystrophy, Becker Muscular Dystropy Parent Project Muscular Dystrophy Pat Furlong, President 1012 N. University Blvd Middletown, OH 45042 (800) 714-KIDS (5437) (513) 424-0696 (513) 425-9907 (fax) * pat@parentprojectmd.org http://www.parentdmd.org 2,6 MUSCULAR DYSTROPHY See also: Facio-Scapulo-Humeral Muscular Dystrophy; Ventilator Users; Spinal Muscular Atrophy; Charcot-Marie-Tooth Disease; Friedreich's Ataxia Muscular Dystrophy Association Bob Mackle, Director of Public Information 3300 E. Sunrise Dr. Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-5300 (fax) * mda@mdausa.org http://www.mdausa.org http://www.mdaenespanol.org 2,3,4,5,8,9 English, Spanish materials; clinics; summer camps; help with equipment purchase; information on all types of muscular dystrophy, as well as SMA, Charcot-Marie-Tooth, Friedreich's ataxia, and mitochondrial myopathy. 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 Inc. Judith Duncan, President & CEO Beth Allison, Director of Social Services 2330 N. Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-6334 (fax) * mdff@mdff.org http://www.mdff.org 5,7 Society for Muscular Dystrophy Information International PO Box 479 Bridgewater, NS CAN B4V 2X6 (902) 685-3961 (902) 685-3962 (fax) * smdi@aura.com http://www.auracom.com/~smi di/index.html 1,2,4 MUSCULAR DYSTROPHY, FACIO-SCAPULO-HUMERAL See: Facio-Scapulo-Humeral Muscular Dystrophy MYASTHENIA GRAVIS See also: Muscular Dystrophy Myasthenia Gravis Foundation of America, Inc Debora K. Boelz CEO 5841 Cedar Lake Rd., Ste. 204 Minneapolis, MN 55416 (800) 541-5454 (952) 646-2028 (fax)) * myastheniagravis@msn.com http://www.myasthenia.org 2,8 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 MYELODYSPLASlA 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 Myoclonus Families United 155 E. 35th St. Brooklyn, NY11234 (718) 252-2133 Myoclonus Research Foundation 200 Old Palisade Rd., Ste. 17D Fort Lee, NJ 07024 (201) 585-0770 http://www.myoclonus.com 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 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 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 Learning Disabilities National Neurofibromatosis Foundation John Radziejewski Director of Public Education 95 Pine St., 16th Floor New York, NY 10005 (800) 323-7938 (212) 747-0004 (fax) * nnff@nf.org http://www.nf.org 2,9 Neurofibromatosis, Inc 9320 Annapolis Rd., Ste. 300 Lanham, MD 20706-2924 (800) 942-6825 (301) 918-4600 (301) 918-0009 (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 (561) 798-0472 (561) 798-9820 (fax) * acn@latitudes.org http://www.latitudes.org 1,2 Children's Neurobiological Solutions 1726 Franceschi Rd. Santa Barbara, CA 93103 (866) 267-5580 or (805) 965-8838 * info@cnsfoundation.org http://www.cnsfoundation.org 8 The Colleen Giblin Foundation Meg Minassian, Exec. Dir. 690 Kinderkamack Rd., Ste. 104 Oradell, NJ 07649 (201) 262-2463 (201) 262-6442 (fax) cgf01@aol.com http://www.colleengiblinfound. org 8,9 NEUROMETABOLIC DISORDERS See: Metabolic Disorders NEURONAL CEROID LIPOFUSCINOSES See: Batten Disease NEUROPATHY, AUDITORY See: Kernicterus NEUROPATHY, HEREDITARY, SENSORY MOTOR See: Charcot-Marie-Tooth Disease NEUROPATHY, PERIPHERAL See: Charcot-Marie-Tooth Disease NEUROTRANSMITTER DISEASES, PEDIATRIC Pediatric Neurotransmitter Disease Association 6 Nathan Dr. Plainview, NY 11803 (516) 937-0049 * PND@pndassoc.org http://www.pndassoc.org 1,2,3,6,7,8,9 NEUTROPENIA Neutropenia Support Assoc., Inc. PO Box 243 905 Corydon Ave. Winnipeg, MB CAN R3M 3S7 (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 Registry; 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.depts.washington. edu/registry 1,2 NEUTROPENIA-PANCREATIC INSUFFICIENCY See: Shwachman Syndrome NEVI, GIANT CONGENITAL See also: Craniofacial Disorders; Ichthyosis; Klippel-Trenaunay Syndrome; Sturge-Weber Syndrome Nevus Network BJ Kelly PO Box 305 West Salem, OH 44287 (419) 853-4525 * info@nevusnetwork.org http://www.nevusnetwork.org 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. Nadine M. Hill, Associate Director 415 Madison Ave. PO Box 49 Fort Atkinson, WI 53538 (920) 563-0930 (920) 563-0931 (fax) * nnpdf@cident.com http://www.nnpdf.org 2,4,8,9 Ara Parseghian Medical Research Foundation 3830 E. Campo Abierto, Ste. 105 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: 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 1,2,3,6 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 SPECTRUM See: Goldenhar Syndrome OCULOCEREBRORENAL SYNDROME See: Lowe Syndrome OCULODENTODIGITAL SYNDROME, TYPE I & II See: Ectodermal Dysplasias OCULOOSTEOCUTANEOUS SYNDROME See: Ectodermal Dysplasias ODONTOONYCHODERMAL DYSPLASIA See: Ectodermal Dysplasias ODONTOONYCHOHYPO-HIDROTIC DYSPLASIA See: Ectodermal Dysplasias ODONTOTRICHODYSPLASIA WITH NEUTROPENIA See: Ectodermal Dysplasias; Neutropenia ODONTOTRICHOMELIC SYNDROME See: Ectodermal Dysplasias OLDFIELD SYNDROME See: Colon Cancer, Hereditary; Polyposis OLIGOPHRENIA-MICROPHTHALMOS See: Norrie Disease OLIGOSACCHARIDOSES See: Tay-Sachs Disease OLLIER DISEASE See also: Growth Disorders; Maffucci Syndrome; Multiple Hereditary Exostosis Ollier/Maffuci Self-Help Group Hermann Schmid, Vice President 74 Aitchison Rd. Binghamton, NY 13905 * hschmid@stny.rr.com olliers@aol.com http://www.ollier-maffucci.org 1,4 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 516 Grand Lake, CO 80447 (970) 627-8935 (phone/fax) (970)627-8818 fax * opitznet@mac.com 1,2,3,4,5,6,7,8,9 OPITZ-BBBG COMPOUND SYNDROME See: Opitz Syndrome OPITZ-FRIAS SYNDROME See: Opitz Syndrome OPSOCLONUS-MYOCLONUS SYNDROME See also: 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/ hotsprings/spa/2190 3 OPTIC NERVE HYPOPLASIA 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 OSTEOCHONDROMATOSIS 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 United Ostomy Association of Canada, Inc PO Box 825-Charles St. E College Park PO 444 Yonge St. Toronto, ON CAN M4Y 2N7 (416) 595-5452 (416) 595-9924 (fax) * uoacan@astral.magic.ca http://www3.ns.sympatico.ca/ canada/ostomy 1,2,3,4,5,6,7,8,9 youth network OXALOSIS & HYPEROXALURIA See also: Kidney Disorders Oxalosis & Hyperoxaluria Foundation 5727 Westcliffe Dr. St. Louis, MO 63129 (618) 281-7540 (888) 721-2432 * ohf@ohf.ultranet.com http://www.ohf.org 1,2,8 OXOPROLINURIA See: Acidemia, Organic PACHYGYRIA See: Lissencephaly PACHYONYCHIA, CONGENITAL See: Ectodermal Dysplasias PAGON SYNDROME See: Hydrocephalus; Lissencephaly PALLISTER-HALL SYNDROME See also: Anorectal Malformations; Pituitary Tumors Pallister-Hall Foundation Debra Messer RFD Box 3000, Fairground Rd Bradford, VT 05033 (802) 222-9683 * messer@sover.net http://www.kumc.edu/gec/su pport/palshall.html 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 POLIO See: Polio PARAMYOTONIA CONGENITA See: Muscular Dystrophy PARKES-WEBER SYNDROME See: Klippel-Trenaunay Syndrome PAROXYMSAL DYSKINESIAS See: Dystonia PARRY-ROMBERG SYNDROME See: Craniofacial Disorders PATIN SYNDROME See: Fibrodysplasia Ossificans Progressiva PDD See: Autism PELIZAEUS-MERZBACHER DISEASE See also: Leukodystrophy The PMD Foundation 333 Homestead Ave. Haddonfield, NJ 08033 (856) 795-1539 (856) 396-0451 (fax) * mlaprocido@pmdfoundation. org http://www.pmdfoundation.org PEMPHIGUS, FAMILIAL See: Ichthyosis PEPCK DEFICIENCY See: Lactic Acidosis; Mitochondrial Disorders PERIPHERAL NEUROPATHY See: Charcot-Marie-Tooth Disease PERONEAL MUSCULAR ATROPHY See: Charcot-Marie-Tooth Disease PERVASIVE DEVELOPMENTAL DISORDER (PDD) See: Autism PEUTZ-TOURAINE SYNDROME See: Colon Cancer, Hereditary; 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 Coalition for PKU & Allied Disorders PO Box 1244 Mansfield, MA 02048 (877) 996-2723 http://www.pkuallieddisorders.org 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 1,3 PHOSPHOENOLPYRUVATE CARBOXYKINASE DEFICIENCY See: Lactic Acidosis; Mitochondrial Disorders PHOSPHOFRUCTO KINASE 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 See: Glycogen Storage 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 Network Association PO Box 1958 Thousand Oaks,CA 91358 (805) 496-4932 (805) 557-1161 (fax) * pna@pituitary.org http://www.pituitary.org 1,2,3,4,7,8 PITYRIASIS RUBRA PILARIS See: Ichthyosis POLIO See also: Ventilator Use spinal cord injured Vaccine Associated Polio Society 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 by GINI Joan L. Headley, Executive Director 4207 Lindell Blvd., No. 110 Saint Louis, MO 63108 (314) 534-0475 (314) 534-5070 (fax) * gini_intl@msn.com http://www.post-polio.org 1,2 Gazette International Networking Institute (GINI) Joan L. Headley: Executive Director 4207 Lindell Blvd No 110 Saint Louis, MO 63108 (314) 534-0475 (314) 534-5070 (fax) * gini_intl@msn.com http://www.post-polio.org 1,3 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; Colon Cancer, Hereditary 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 The Children's Pompe Foundation 66 Witherspoon St, Ste 341 Princeton, NJ 08542 (609) 924-7192 (609) 767-2154 (fax) * info@pompe.org 2,3,4,7,8 PORPHYRIA American Porphyria Foundation PO Box 22712 Houston, TX 77227 (713) 266-9617 (713) 871-1788 (fax) * porphyrus@juno.com http://www.porphyriafoundatio n.com/ 1,2,3,4,8 Canadian Porphyria Foundation Inc. Box 1206 Neepawa, MB CAN ROJ 1H0 (204) 476-2800 (voice/fax) * porphyria@cpf-inc.ca http://www.cpf-inc.ca 1,2,7,9 French materials PORT WINE STAINS See: Sturge-Weber Syndrome POST-POLIO See: Polio 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/prad er-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@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 PRIMARY IMMUNE DISORDER See: Granulomatous Disease, Chronic 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) 494-4835 (fax) * wtbibr@aol.com 3,9 The Progeria Research Foundation, Inc. PO Box 3453 Peabody, MA 01961 (978) 535-2594 (978) 535-5849 (fax) * progeria@netzero.com http://www.progeriaresearch.org 1,2,8,9 PROGRESSIVE HYPOERYTHEMIA See: Anemia, Aplastic PROGRESSIVE OSSEOUS HETEROPLASIA See: Connective Tissue Disorders; Fibrodysplasia Ossificans Progressiva PROPINONYL-COA CARBOXYLASE (PCC) See: 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 3,4 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 STENOSIS See: Heart Disorders PURINE METABOLIC DISORDERS See also:autism Purine Research Society Tahma Metz: Executive Director 5424 Beech Ave. Bethesda, MD 20814-1730 (301) 530-0354 (301) 564-9597 (fax) * purine@erols.com http://www2.dgsys.com/~purine/ 2,4,8 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 RARE DISORDERS See: Genetic Disorders RASMUSSEN ENCEPHALITIS See: Rasmussen Syndrome RASMUSSEN SYNDROME See also: Epilepsy; Seizure Disorders Rasmussen's Syndrome and Hemispherectomy Support Network Lynn/Al Miller: co-founders 8235 Lethbridge Rd. Millersville, MD 21108 (410) 987-5221 (voice) * rssnlynn@aol.com 1,4,6 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 60 St Claire Ave East St 703 Toronto, ON CAN M4T-1N5 (800) 461-3331 (Canada only) (416) 360-4200 (416) 360-0060 (fax) 1,2,3,5,7,8 French materials The Foundation Fighting Blindness Mitsy Palmer: Constituent Services Coordinator & Edy Asbell: Constituent Services Representative 11435 Cronhill Dr. Owings Mill, MD 211117-2220 (888) 394-3937 (800) 683-5551 (Toll Free TDD) (410) 568-0150 (410) 363-7139 (local TDD) (410) 363-2393 (fax) * info@blindness.org http://www.blindness.org 1,2,3,4,5,6,8,9 young adult program, retina donor program RETINOBLASTOMA See also: Cancer; Visual Impairments National Retinoblastoma Parent Group PO Box 317 Watertown, MA 02471 (800) 562-6265 (617) 972-7444 (fax) 1,2,3,4,57 RETINOCEREBRAL ANGIOMATOSIS See: Von Hippel-Lindau Syndrome RETT SYNDROME International Rett Syndrome Association Kathy Hunter Parent: Founder and President 9121 Piscataway Rd. Clinton, MD 20735 (301) 856-3334 (301) 856-3336 (fax) * khunter@rettsyndrome.org http://www.rettsyndrome.org 1,2,3,4,67,8 Ontario Rett Syndrome Association 147 Westdale Rd. Oakville, ON CAN L6L 4Z7 (905) 844-7673 (905) 884-8730 (fax) * rettsyndromeontario@home. com http://members.home.net/rettsy ndromeontario 1,2,3,4,5,6,8 Rett Syndrome Research Foundation 4600 Devitt Dr, Cincinnati, OH 45246 (513) 874-3020 (513) 874-2520 (fax) http://www.rsrf.org 1,8,9 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-Hirschhorn Syndrome 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 (763) 434-1152 (763) 434-3691 (fax) * kmkruger@qwest.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) * lbaxter@ruraltel.net http://www.rubinstein-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 Ave. Oak Park, IL 60302 (800) 3-Magic-3 (362-4423) (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 Foundation, Inc. 12 Kent Way, Ste. 101 Byfield, MA 01915 (800) 722-HOPE (4673) (978) 463-5843 (978) 463-5809 (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 SCOLIOSIS National Scoliosis Foundation 5 Cabot Pl. Stoughton, MA 02072 (800) NSF-MYBACK (673-6922) (781) 341-6333 (781) 341-8333 (fax) * NSF@scoliosis.org http://www.scoliosis.org 1,2,3,4,5,6,7 SECKEL SYNDROME See: Craniofacial Disorders; Growth Disorders SEIZURE DISORDERS See also: Epilepsy THRESHOLD--Intractable Seizure Disorder Support Group & Newsletter Epilepsy Foundation of NJ Lion Head Office Park., Ste. 8A 35 Beaverson Blvd. Brick, NJ 08723 (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 2453 Emerald St. San Diego, CA 92109 (866) FOCUS50 (362-8750) (858) 273-1473 * support@focusfamilies.org http://www.focusfamilies.org 1,2,3,4,6,8,9 Affiliated organizations in Italy and France 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 65030 Lubbock, TX 79464-5030 (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, Intl. c/o Nancy Ruick 5195 Hampsted Village Center Way, PMB # 162 New Albany, OH 43054-8331 1-877-SDS INTL(737-4685) (614) 939-0752 (fax) * 4SSkids@shwachmandiamond.org http://www.shwachmandiamond.org 1,2,3,4,6,8 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 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 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) * scda@sicklecelldisease.org http://www.sicklecelldisease.org 1,2,3,4,5,6,8,9 Sickle Cell Disease Association of the Piedmont PO Box 20964 Greensboro, NC 27420 (800) 733-8297 (336) 274-1507 (336) 275-4251 (fax) * scdap@aol.com http://www.scdap.org 1,2,3,4,5,6,7 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 SLD See: Dyslexia SLO SYNDROME See: Smith-Lemli-Opitz Syndrome SLY SYNDROME See: Mucopolysaccharidosis; Tay-Sachs Disease SMITH-LEMLI-OPITZ SYNDROME See: Craniofacial Disorders Smith-Lemli-Opitz (RSH) Advocacy & Exchange 2650 Valley Forge Dr. Boothwyn PA 19061 (610) 485-9663 (419) 781-3317 (fax) * bhook@erols.com http://www.members.aol.com/sl o97/index.html 1,2,3,6,9 SMITH-MAGENIS SYNDROME PRISMS (Parents and Researchers Interested in Smith-Magenis Syndrome) Connie Bessette: President 76 South New Boston Rd. Francestown, NH 03043-3511 (603) 547-8384 (603) 547-3043 (fax) * info@smithmagenis.org http://www.smithmagenis.org 1,2,3,4,5 SOTOS SYNDROME See also: Growth Disorders Sotos Syndrome USA Support Association 3 Danada Sq. E. PMB #235 Wheaton, IL 60187 (888) 246-SSSA (7772) (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: 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 Spinal Cord Injuries 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 #997-167 Lombard Ave, Winnipeg, MB CAN R3B 0V6 (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, Spinal Cord Injury, Spina Bifida, Multiple Sclerosis, Stroke, Cerebral Palsy, Amyotrophic Lateral Sclerosis (ALS), Post-Polio Syndrome, Traumatic Brain Injury (TBI) Christopher and Dana Reeve Paralysis Resource Center 636 Morris Turnpike, Ste 3A Short Hills, NJ 07078 (800) 539-7309 (973) 467-8270 (973) 467-9845 (fax) * prc@crpf.org http://www.paralysis.org 2,9 National Spinal Cord Injury Association 6701 Democracy Blvd.,Ste. 300-9 Bethesda, MD 20817 (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 SPINAL MUSCULAR ATROPHY Families of SMA PO Box 196 Libertyville, IL 60048-0196 (800) 886-1762 (847) 367-7620 (847) 367-7623 (fax) * info@fsma.org http://www.fsma.org 1,2,3,4,5,6,7,8,9 Spanish materials Muscular Dystrophy Association Bob Mackle, Director of Public Information 3300 E. Sunrise Dr Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-5300 (fax) * mda@mdausa.org http://www.mdausa.org http://www.mdaenespanol.org 2,3,4,5,8,9, Muscular Dystrophy Family Foundation, Inc. 2330 N. Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) * mdff@mdff.org http://www.mdff.org 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 See: 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.stickler.org * sip@sticklers.org 1,2,3,6 STROKE See also: Aphasia, Acquired; Heart Disorders; Spinal Cord Injuries National Stroke Association 9707 E. Easter Ln. Englewood, CO 80112-5112 (800) 787-6537 (303) 649-9299 (303) 649-1328 (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 St. Ste 1402 Ottawa, ON CAN K1P 5V9 (613) 569-4361 (888) HSF-INFO (473-4636) (613) 569-3278 (fax) http://www.heartandstroke.ca http://www.fmcoeur.ca 2,4,5,7,8 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 STURGE-WEBER SYNDROME See also: Craniofacial Disorders; Epilepsy; Glaucoma; Klippel-Trenaunay Syndrome; Nevi, Giant Congenital; Neurofibromatosis; Tuberous Sclerosis; Von Hippel-Lindau Syndrome Sturge-Weber Foundation Carol Buck, VP, Admin Research 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 1,4,6; 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/ ~cvs0590 1,2,3,4,6,7,8,9 STUTTERING 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) * stutter@stutteringhelp.org http://www.stutteringhelp.org 2,4,6; Spanish materials SUBACUTE NECROTIZING ENCEPHALOPATHY See: Mitochondrial Disorders SUBACUTE SCLEROSING PANENCEPHALITIS See also: Epilepsy; Visual Impairments National Institute of Neurological Disorders & Stroke (NINDS) PO Box 5801 Bethesda, MD 20824 (800) 352-9424 (301) 496-5751 (301) 402-2186 (fax) * braininfo@ninds.nih.gov http://www.ninds.nih.gov National Organization for Rare Disorders (NORD). 55 Kenosia Ave. Danbury, CT 06810 (800) 999-6673 (203) 744-0100 (203) 797-9590 (TDD) (203) 798-2291 (fax) * orphan@rarediseases.org http://www.rarediseases.org 1,2,3,4,6,7,8 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 1,2,3,4,5,6,7,8 French/ English 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@sidscenter.org http://www.sidscenter.org 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) * info@asap4sm.org 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 Brighton, MA 02135 (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 410 Stuart St.. Boston, MA 02116 (800) 832-8321 (617) 534-1515 (fax) * info@allthyroid.org http://www.tfa.org 1,2,5,8 Thyroid Foundation of Canada PO Box/CP 1919 STN Main, Kingston, ON CAN K7L 5J7 (613) 544-8364- (800) 267-8822 (In Canada) (613) 544-9731 (fax) * thyroid@kos.net http://www.thyroid.ca 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 Judit Ungar, President 42-40 Bell Blvd. Bayside, NY 11361-2820 (718) 224-2999 (718) 279-9596 (fax) * ts@tsa-usa.org http://www.tsa-usa.org 2,4,5,8,9 Tourette Syndrome Foundation of Canada #206, 194 Jarvis St. Toronto, ON CAN M5B 2B7 (800) 361-3120 (Canada only) (416) 861-8398 (416) 861-2472 (fax) * tsfc.org@tourette.ca http://www.tourette.ca 1,2,3,4,5,6,7,8 to a very small degree.; school in-servicing program; print material in French and English; kids' programs TOXIC PARALYTIC ANEMIA See: Anemia, Aplastic TREACHER COLLINS SYNDROME See also: Craniofacial Disorders; Hearing Impairments Treacher Collins Foundation PO Box 683 Norwich, VT 05055-0683 (802) 649-3050 * hopecharkins@hotmail.com http://www.treachercollinsfnd.org 1,2,3,4,6 TREMOR International Essential Tremor Foundation Catherine S. Rice, Executive Director PO Box 14005 Lenexa, KS 66285-4005 (913) 341-3880 (913) 341-1296 (fax) * staff@essentialtremor.org http://www.essentialtremor.org 2,9, TRICHODENTOOSSEOUS SYNDROME: TYPES I, II & III See: Ectodermal Dysplasias TRICHODYSPLASIA- ONYCHOGRYPOSIS- HYPOHIDROSIS-CATARACT See: Ectodermal Dysplasias TRICHOFAClOHYPOHIDROTIC 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 TRISOMY 13 See: Chromosome 13 & 18 Disorders TRISOMY 18 See: Chromosome 13 & 18 Disorders TRP (TRICHORHINOPHALANGEAL) SYNDROME, TYPES I & II See: Ectodermal Dysplasias TUBEROUS SCLEROSIS See also: Autism; Epilepsy; Learning Disabilities Tuberous Sclerosis Alliance 801 Roeder Rd, Ste. 750 Silver Spring, MD 20910 (800) 225-6872 (301) 562-9890 (301) 562-9870 (fax) * tsalliance@tsalliance.org http://www.tsalliance.org 1,2,3,6,8 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) * info@tscst.org http://www.tscst.org 1,2,3,4,7,8 TURCOT SYNDROME See: Brain Tumors; Cancer Hereditary Colon 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 (832) 249-9987 (fax) * shel@turner-syndrome-us.org http://www.turner-syndromeus.org 1,2,3,4,5,6,9 Spanish materials TWIN-RELATED DISEASES Twin Hope Twin Hope, Inc. Northern Office 2592 West 14th St. Cleveland, Ohio 44113 Twin Hope, Inc. Southern Office 3837 Barbara Ann Blvd. Crestwood, KY 40014 (502) 243-2110 (Twin Hope 24 hour hotline) (859) 879-9120 (Twin Hope 24 hour hotline) * twinhope@twinhope.com http://www.twinhope.com 1,2,3,4,5,7,8,9 Spanish, German, and French materials: family guides TWIN TO TWIN TRANSFUSION SYNDROME See also: Twin-Related Diseases; Cerebral Palsy; Learning Disabilities Twin to Twin Transfusion Syndrome Foundation Mary Slaman-Forsy: Founder and President 411 Longbeach Parkway Bay Village, OH 44140 (800) 815-9211 (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, TYROSYLURIA See also: Kidney Disorders; Liver Disorders Groupe Aide aux Enfants Tyrosinemiques du Quebec Gerard Tremblay, President 3162, Rue Granville Jonquiere, QC CAN G7S 2B9 (418) 548-1580 * gerard.tremblay@sympatico.ca http://www.cegepchicoutimi.qc.ca/gaetq/ 1,6,9 ULCERATIVE COLITIS See: Crohn Disease & Colitis 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 1,2,3,4,5,7,8,9 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) * info@tefvater.org http://www.tefvater.org 1,2,3,7,8,9 VAN MEERKEREN I SYNDROME See: Ehlers-Danlos Syndrome VASCULAR MALFORMATIONS See: Klippel-Trenaunay Syndrome; 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 1,2,3,6,9 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.vcfsef.org http://www.vcfs.org/ 2,3,4,9 VENTILATOR USE See also: Spinal Cord Injury, SMA, Polio Citizens for Independence in Living & Breathing 78 Golfwood Heights Toronto, ON CAN M9P 3M2 (416) 244-2248 (phone/fax) 2,3,4,5,7,9 International Ventilator Users Network by GINI (IVUN) Judith Fischer, Editor, IVUN News Joan L. Headley, Executive Director, Gazette International Network Institute (GINI) 4207 Lindell Blvd,# 110 St Louis, MO 63108-2915 (314) 534-0475 (314) 534-5070 (fax) * gini_intl@msn.com http://www.post-polio.org/ivun 1 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) 229-7705 (503) 229-8064 (fax) * veda@vestibular.org http://www.vestibular.org 1,2,3,4; Spanish materials VISUAL IMPAIRMENT/ HEARING IMPAIRMENT See: Deaf-Blind VISUAL IMPAIRMENTS See also: Albinism & Hypopigmentation; Glaucoma; Macular Diseases; Retinitis Pigmentosa; Retinoblastoma; Septo-Optic Dysplasia; Usher Syndrome, Deaf-Blind American Council of the Blind Charles Crawford, Executive Director 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 2,4,7 American Foundation for the Blind 11 Penn Plaza, Ste. 300 New York, NY 10001 (800) 232-5463 (212) 502-7600 (212) 502-7777 (fax) (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 .org 1,2,3,4,8 Spanish materials Blind Children's Fund 311 W. Broadway Ste 1 Mt. Pleasant, MI 48858 (989) 779-9966 (989) 779-0015 (fax) * bcsf@blindchfnd.org http://www.blindchildrensfund. org 1,2,4,6 Braille Institute 741 N. Vermont Ave. Los Angeles, CA 90029 (323) 663-1111 (323) 663-0867 (fax) * info@brailleinstitute.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 (TDD) (416) 480-7677 (fax) * marjerb@east.cnib.ca http://www.cnib.ca 1,2,3,4,6,7,8 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 Mitsy Palmer, Constituent Service Coordinator 11435 Cranhill Dr. Owings Mill, MD, 21117-2220 (800) 683-5555 (800) 683-5551(TDD) (410) 363-2393 (fax) * info@blindness.org http://www.blindness.org 1,2,4,6,9 National Center for Vision Child Development (Lighthouse Int'l) Cheryl L. Heide, Administrative Assistant 111 E. 59th St. New York, NY 10022-1202 (800) 829-0500 (212) 821-9784 (fax) (212) 821-9713 (TDD) * envision@lighthouse.org http://www.lighthouse.org 1,2,9 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/ Mandarin materials; large-print lending library National Braille Press 88 St. Stephen St. Boston, MA 02115 (888) 965-8965 (617) 266-6160 (617) 437-0456 (fax) * orders@nbp.org http://www.nbp.org 1,2,7 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) * nfb@nfb.org 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) * info@preventblindness.org http://www.preventblindness. org 1,2,4,5,6,7,8 Spanish materials Recording for the Blind & Dyslexic 20 Roszel Rd. Princeton, NJ 08540 (609) 520-8079 (800) 221-4797 (609) 520-7990 (fax) * info@rfbd.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 National Vitiligo Foundation 611 S 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 DISEASE See: Neurofibromatosis VON WILLEBRAND DISEASE See: Hemophilia VROLIK DISEASE, TYPE II See: Osteogenesis Imperfecta WAGR SYNDROME See also: Aniridia; Wilm's Tumor The WAGR Network c/oAnnie Prusakiewicz 2063 Regina Ave Lincoln Park, MI 48146 (313) 381-4302 * ReachingOutNet@aol.com http://www.wagr.org http://members.aol.com/Reachi ngOutNet/index.htm. 1,2,3,6,9 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'S GRANULOMATOSIS See also: Immune Disorders Wegener's Granulomatosis Association (International) PO Box 28660 Kansas City, MO 64188-8660 (800) 277-9474 (816) 436-8211 (fax) * wgsg@wgassociation.org http://www.wgassociation.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 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 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) 244-2229 (800) 806-1871 (248) 244-2230 (fax) * TMonkaba@ williams-syndrome.org http://www.williams-syndrome.org 1,2,3,4,5,6,8,9 DNA research bank, annual music camp Williams Syndrome Foundation University of California Irvine, CA 92679-2310 (949) 824-7259 * hlenhoff@uci.edu http://www.williamssyndrome.org WILLIAMS-BEUREN SYNDROME See: Williams Syndrome WILM'S TUMOR See: WAGR Syndrome, Genitalia, Ambiguous WILSON'S DISEASE Wilson's Disease Association Dr. A Sellner, President 4 Navaho Dr. Brookfield, CT 06804-3124 (800) 399-0266 (203) 775-9666 (phone/fax) * hasellner@worldnet.att.net http://www.wilsonsdisease.org 1,2,7,8 WISKOTT-ALDRICH SYNDROME See: Immune Disorders; Purpura, Idiopathic Thrombocytopenia WOLF SYNDROME See: Wolf-Hirschhorn Syndrome WOLF-HIRSCHHORN SYNDROME See also: Chromosome 4p- 4p- Support Group C/o Kathy Sjodin 542 79th Ave. NE Ave Spring Lake Park, FL, 55432 (763) 780-3311 * kssjodin@aol.com http://4p-supportgroup.org 1,2,3,6,9 X-LINKED ALPHA THALASSEMIA See: Alpha Thalassemia Mental Retardation Syndrome, X-linked 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) office@cord.ca http://www.cord.ca 1,2,3,4 XP Society PO Box 4759 Poughkeepsie, NY 12602 (877) 977-2873 (US only) (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 KEY TO SERVICES 1 Periodical/newsletter 2 Informational materials 3 Networking/matching 4 Referrals to local resources 5 Local chapters 6 National conferences 7 Maintain research registry |
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