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National Resources for Specific Disabilities.

This directory includes national groups and organizations that can serve as resources for parents and professionals seeking information and support regarding specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Federally-Funded Information Resources, Parent to Parent Programs, or certain National Information and Advocacy Resources (see Table of Contents for page numbers). In addition, Matching Resources, at the end of this directory, may also be useful.

CROSS-REFERENCING

Categories have been cross-referenced where appropriate.

Many conditions are known by more than one name. Readers are directed to "See" other relevant category names where resources are also listed. Under CHROMOSOME 4P-, for example, readers are referred to WOLF-HIRSCHHORN SYNDROME.

Some specific disabilities are not 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 condition ARGINASE DEFICIENCY is cross-referenced to UREA CYCLE DISORDERS. 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 is cross-referenced to TURNER'S SYNDROME and HYPOPIGMENTATION.

In cases where resources are available for both a general category of disability (for example, VISUAL IMPAIRMENT), as well as specific conditions within that general category (for example, ALBINISM; GLAUCOMA; MACULAR DISEASES; RETINITIS PIGMENTOSA; RETINOBLASTOMA; SEPTO-OPTIC DYSPLASIA; and USHER SYNDROME), cross-referencing goes in two directions. Under VISUAL IMPAIRMENTS, for example, readers are informed of the types of visual impairments for which specific resources exist; and under each specific type of visual impairment, readers are referred back to the more general category. The only exception to this type of cross-referencing is the general category MENTAL RETARDATION, 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 (LMBBS), readers are directed to "See also" KIDNEY DISORDERS and RETINITIS PIGMENTOSA, though neither of these conditions refer back to LMBBS. This is because LMBBS typically includes kidney complications and retinitis pigmentosa, but a primary diagnosis of either one of these conditions does not typically include LMBBS.

Cross-referencing assistance came from the organizations listed in this directory, from the National Organization for Rare Disorders (NORD) and their Resource Guide (third edition, 1997, available for $43.50 through the EXCEPTIONAL PARENT Library [800] 535-1910; catalogue number NO200D), and from the Physician's Guide to Rare Diseases (second edition, 1995, edited by Jess G. Thoene, M.D., which is also available from the EXCEPTIONAL PARENT Library).

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, World Wide Web sites and e-mail addresses have been included. Web sites are listed beginning with their addresses, so remember to include the standard http:// before each. E-mail addresses are indicated by the symbol, ??. (Unless otherwise indicated, all telephone numbers are for voice only.)
11-[Beta]-HYDROXYLASE DEFICIENCY

See: Adrenal Hyperplasia, Congenital

17-20-DESMOLASE DEFICIENCY

See: Adrenal Hyperplasia, Congenital

17-ALPHA-HYDROXYLASE DEFICIENCY

See: Adrenal Hyperplasia, Congenital

17-HYDROXYLASE DEFICIENCY

See: Adrenal Hyperplasia, Congenital

21-HYDROXYLASE DEFICIENCY

3-[Beta]-HYDROXYSTEROID
DEHYDROGENASE DEFICIENCY

See: Adrenal Hyperplasia, Congenital

45, X SYNDROME

See: Turner's Syndrome;
Hypopigmenation

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; Muscular Dystrophy

(AMDA) Acid Maltase
Deficiency Association
PO Box 700248
San Antonio, TX 78270-0248
(210) 494-6144
(210) 490-7161 (fax)
www.members.aol.com/amdapage/index.htm
??tianrama@aol.com

ACIDEMIA, ISOVALERIC (IVA)

See: Acidemia, Organic

ACIDEMIA, METHYLMALONIC

See: Acidemia, Organic

ACIDEMIA, ORGANIC

See also: Fatty Oxidation Disorder;
Maple Syrup Urine Disease;
Metabolic Disorders

Organic Acidemia Association
14600 41st Avenue N.
Plymouth, MN 55446
(612) 694-1797
(612) 594-0017 (fax)
www.oaanews.org
??oaanews@aol.com
1,3

ACIDEMIA, PROPIONIC

See: Acidemia, Organic

ACOUSTIC NEUROMA

See also: Balance Disorders &
Dizziness; Brain Tumors; Hearing
Impairments; Neurofibromatosis;
Neurofibromatosis, Type 2;
Vestibular Disorders

Acoustic Neuroma Association
PO Box 12402
Atlanta, GA 30355
(404) 237-8023
(404) 237-2704 (fax)
www.anausa.org
??anausa@aol.com
1,2,6,9

Acoustic Neuroma Association
of Canada
PO Box 369
Edmonton, AB CAN T5J 2J6
(800) 561-2622 (V/TTY, Canada)
(403) 428-3384 (V/TTY)
??anac@compusmart.ab.ca
1,2,3,4,5,6,7; French materials

ACQUIRED IMMUNE
DEFICIENCY SYNDROME

See: AIDS

ACROCEPHALOSYNDACTYLY,
TYPE I

See: Apert Syndrome

ACROCEPHALOSYNDACTYLY,
TYPE II

See: Crouzon Disease

ACROFACIAL DYSOSTOSIS,
NAGER TYPE

See: Nager & Miller Syndromes

ACROMEGALY

See: Multiple Endocrine Neoplasia I;
Pituitary Tumors

ACTH DEFICIENCY

See: Adrenal Disorders

ACYL-COA DEHYDROGENASE
DEFICIENCY, MEDIUM-CHAIN

See: Fatty Oxidation Disorder

ADDISON DISEASE

See: Adrenal Disorders; Adrenal
Hyperplasia, Congenital

ADIPOGENITAL-RETINITIS
PIGMENTOSA-POLYDACTYLY
SYNDROME

See: Laurence-Moon-Bardet-Biedl
Syndrome

ADRENAL DISORDERS

National Adrenal
Diseases Foundation
505 Northern Blvd.
Great Neck, NY 11021
(516) 487-4992
medhlp.netusa.net/www/nadf.htm
??nadf@aol.com
1,2,3,4,5

ADRENOCORTICOTROPIC
HORMONE DEFICIENCY

See: Adrenal Disorders; Pituitary Disorders

ADRENOLEUKODYSTROPHY

See: Leukodystrophy; Tay-Sachs Disease

ADRENOLEUKODYSTROPHY,
NEONATAL

See: Leukodystrophy; Tay-Sachs Disease

AGENESIS OF COMMISSURA
MAGNA CEREBRI

See: Agenesis of the Corpus Callosum

AGENESIS OF THE
CORPUS CALLOSUM

See also: Aicardi Syndrome

ACC Network
5749 Merrill Hall, Rm. 18
University of Maine
Orono, ME 04469-5749
(207) 581-3119
(207) 581-3120 (fax)
??um-acc@maine.maine.edu
3

AGYRIA

See: Lissencephaly

AICARDI SYNDROME

See also: Agenesis of the Corpus
Callosum; Epilepsy; Visual Impairments

Aicardi Syndrome Awareness
and Support Group
29 Delavan Ave.
Toronto, 0N CAN M5P 1T2
(416) 481-4095
2,3,4,7,9

Aicardi Syndrome Newsletter
PO Box 398
Fletcher, OH 45326
(937) 368-2137 (voice/fax)
www.Aicardi.com
??AICNews@aol.com
1,2,3,4,6,7,8,9

AIDS

CDC National AIDS Hotline
American Society Health Assn.
PO Box 13827
Research Triangle Park, NC 27709
(800) 342-2437
(800) 344-7432 (Spanish)
(800) 243-7889 (TTY)
(919) 361-4855 (fax)
www.ashastd.org
2,4; Spanish materials

National Pediatric & Family HIV
Resource Center
30 Bergen St.-ADMC- 4
Newark, NJ 07107
(800) 362-0071
(973) 972-0410
(973) 972-0399 (fax)
www.wdcnet.com/pedsaids
??nphrc@daiid.umdnj.edu
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
www.athnet.net/~luxhoj/
alagillesyndrome.html
??cchannn@worlnet.att.net
1,2,3,4,9

ALANINURIA

See: Lactic Acidosis; Acidemia, Organic

ALBINISM &
HYPOPIGMENTATION

See also: Visual Impairments

NOAH (National Organization for
Albinism and Hypopigmentation)
1530 Locust St., # 29
Philadelphia, PA 19102
(800) 473-2310
(609) 858-4337
www.albinism.org/
??noah@albinism.org
1,2,5,6,7,9; Spanish materials

ALBRIGHT SYNDROME

See: McCune-Albright Syndrome

ALGONEURODYSTROPHY REFLEX

See: Sympathetic Dystrophy Syndrome

ALLERGY

See: Asthma & Allergy; Food Allergy;
Latex Allergy

ALLERGY, FOOD

See: Food Allergy

ALLERGY, LATEX

See: Latex Allergy

ALOPECIA AREATANATIONAL

Alopecia Areata Foundation
710 C St., Ste. 11
San Rafael, CA 94901
(415) 456-4644
(415) 456-4274 (fax)
??74301.1642@compuserve.com
1,2,3,4,5,6,7,8,9;
Spanish materials

ALOPECIA UNIVERSALA-ONYCHODYSTROPHY-TOTAL VITILIGO

See: Ectodermal Dysplasias; Vitiligo

ALOPECIA-ANOSMIA-DEAFNESS-HYPOGONADISM

See: Ectodermal Dysplasias

ALOPECIA-ONYCHODYSPLASIA-HYPOHIDROSIS

See: Ectodermal Dysplasias

ALPHA-1-ANTITRYPSIN
(AAT) DEFICIENCY

See also: Liver Disorders; Lung Disorders

Alpha-1 National Association
4220 Old Shakeopee Red, Ste. 101
Minneapolis, MN 55437
(612) 703-9979
(612) 885-0133
www.alpha1.org
??brandley@alpha1.org
1,2,3,4,5,6,7,9

ALPHA-GALACTOSIDASE
DEFICIENCY

See: Fabry Disease

ALPORT SYNDROME

See: Hearing Impairments; Kidney
Diseases, Hereditary; Vision Impairments

ALSTROM SYNDROME

See also: Diabetes Mellitus; Hearing
Impairments; Kidney Disorders;
Retinitis Pigmentosa; Visual Impairments

Alstrom Syndrome Newsletter
1006 Howard Rd.
Warminster, PA 18974
(215) 674-1936
www.jax.org/alstrom
??sasg@voicenet.com
1,3,9

ALTERNATING HEMIPLEGIA

See: Hemiplegia, Alternating

AMELOCEREBROHYPHOHIDROTIC
DYSPLASIA

See: Ectodermal Dysplasias

AMELOONYCHOHYPHOHIDROTIC
SYNDROME

See: Ectodermal Dysplasias

AMNIOTIC BANDS

See: Craniofacial Disorders

AMPUTATION

See also: Limb Disorders

American Amputee Foundation
PO Box 250218
Little Rock, AR 72225
(501) 666-2523
(501) 666-8367 (fax)
1,2,4,5,9

Amputee Coalition of America
900 E. Hill Ave., Ste. 285
Knoxville, TN 37915-2568
(888) AMP-KNOW (267-5669)
(423) 524-8772
(423) 525-7917
www.amputee-coalition.org.
??ACAOne@aol.com
1,2,3,4,5,6,7,8,9,
Spanish materials

National Amputation Foundation
38-40 Church St.
Malvern, NY 11565
(516) 887-3600
(516) 887-3667 (fax)
1,2,3,4,7,9

AMSTERDAM DWARF
SYNDROME OF DE LANCE

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

ANATHALMIA

International Children's
Anathalmia Network
Genetics: Albert Einstein Medical Ctr.
5501 Old York Rd.
Philidelphia, PA 19141
(215) 456-8722
(215) 456-2356 (fax)
www.ioi.com/ican

ANDERSEN DISEASE

See: Glycogen Storage Diseases;
Anderson-Fabry Disease;
Fabry Disease

ANDERSON-WARBURG SYNDROME

See: Norrie Disease

ANEMIA, APLASTIC

See: Anemia, Fanconi; Bone
Marrow Transplant

Aplastic Anemia
Association of Canada
22 Aikenhead Rd.
Etobicoke, 0N CAN M9R 2Z3
(416) 235-0468
(519) 235-1756 (fax)
www.aplastic.ualberta.ca
1,2,4,7,8,9

Aplastic Anemia Foundation
of America
PO Box 613
Annapolis, MD 21404
(800) 747-2820
www.aplastic.org
??aafacenter@aol.com
1,2,3, 4,5,6,8,9; Spanish/French/
Japanese materials

ANEMIA, AREGENERATIVE

See: Anemia, Aplastic

ANEMIA, COOLEY

See: Cooley Anemia

ANEMIA, ERYTHROBLASTOTIC

See: Cooley Anemia

ANEMIA, FANCONI

See also: Anemia, Aplastic; Heart
Disorders; Kidney Disorders; Leukemia

Fanconi Anemia Research
Fund/Support Group
1902 Jefferson, #2
Eugene, OR 97405
(800) 828-4891
(541) 687-4658
(541) 687-0548 (fax)
??fafund@rio.com
1,2,3,6,8,9; 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
www-chem.ucsd.edu/asf
1,2,4,5,6,8,9

Canadian Angelman
Syndrome Society
PO Box 37
Priddis, AB CAN T0L 1W0
(403) 931-2415 (voice/fax)
??caff@cadvision.com
1,2,3,5,6,9; French materials

ANGIO-OSTEOHYPERTROPHY
SYNDROME

See: Klippel-Trenaunay Syndrome

ANGIOKERATOMA CORPORIS
DIFFUSUM

See: Fabry Disease

ANGIOMA

See: Hemangioma; Vascular Malformations

ANGIOMATOSIS RETINA

See: Von Hippel-Lindau Syndrome

ANIRIDIA

See: Visual Impairments

ANKYLOSING SPONDYLITIS,
JUVENILE

See: Arthritis

ANOPHTHALMIA

See also: Visual Impairments

International Children's
Anophthalmia Network
5501 Old York Rd.
Philadelphia, PA 19141
(800) 580-4226
(215) 456-2350 (fax)
1,2,3,4,6,9

ANORECTAL MALFORMATIONS

See also: Intestinal Pseudo-Obstruction
Syndrome

Pull-Thru Network
4 Woody Ln.
Westport, CT 06880
(203) 221-7350
(203) 221-9212 (fax)
www.members.aol.com/pullthrunw/
Pullthru.html
??pullthrunw@aol.com
1,2,3,4

APECED SYNDROME

See: Ectodermal Dysplasia;
Hypoparathyroidism

APERT SYNDROME

See also: Craniofacial Disorders

Apert Support and
Information Network
PO Box 1184
Fair Oaks, CA 95628
(650) 961-1092 (voice/fax)
??apertnet@ix.netcom.com
1,2,3

Apert Syndrome Pen Pal Network
PO Box 115
Providence, RI 02901
(401) 421-9076
3,4

Apert Syndrome Support Group
8708 Kathy St.
St. Louis, MO 63126
(314) 965-3356
3,4,5

APHASIA, ACQUIRED

See also: Brain Injury; Stroke

National Aphasia Association
156 Fifth Ave., Ste. 707
New York, NY 10010
(800) 922-4622
(212) 989-7777 (fax)
www.aphasia.org
??klein@aphasia.org
1,2,3,4,5

APLASTIC ANEMIA

See: Anemia, Aplastic

APNEA, INFANTILE

See: Apnea, Sleep

APNEA, SLEEP

American Sleep Apnea Association
1424 K Street NW, Ste. 302
Washington, DC 20005
(202) 293-3656
sleepapnea.org
??asaa@nicom.com
1,2,4,5,7,6

APRAXIA

See also: Language Disorders;
Learning Disabilities

National Organization for
Apraxia and Dyspraxia
7675 Charter Oaks Dr.
Pensacola, FL 32514
(904) 478-4895 (voice/fax)
(904) 494-1444 (TTY)
??dyspraxia@aol.com
1,2,3,4,7,9

AQUEDUCTAL STENOSIS

See: Hydrocephalus

ARACHNODACTYLY

See: Marfan Syndrome

AREGENERATIVE ANEMIA

See: Anemia, Aplastic

ARGINASE DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCISE DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCINIC ACID
SYNTHETASE DEFICIENCY

See: Urea Cycle Disorders

ARGININOSUCCINIC ACIDURIA

See: Urea Cycle Disorders

ARNOLD-CHIARI
MALFORMATION

See also: Spina Bifida; Syringomyelia

Arnold-Chiari Family Network
c/o Maureen & Kevin Walsh
67 Spring St.
Weymouth, MA 02188
(617) 337-2368
2,3

ARTERIOHEPATIC DYSPLASIA

See: Alagille Syndrome

ARTERIOVENOUS
MALFORMATIONS (AVMS)

See also: Epilepsy; Stroke;
Vascular Malformations
AVM Support Group of Nevada
PO Box 1261
Fernley, NV 89408
(702) 575-5421
2,3,4

ARTHO-OPHTHALMOPATHY

See: Stickler Syndrome

ARTHRITIS

American Juvenile
Arthritis Organization
1330 W. Peachtree St.
Atlanta, GA 30309
(800) 283-7800
(404) 872-7100
(404) 872-9559 (fax)
??jaustin@arthritis.org
1,2, 4, 7,8; Spanish materials

Arthritis Society
393 University Ave., Ste. 1700
Toronto, ON CAN M5G 1E6
(800) 321-1433 (ON only)
(416) 979-7228
(416) 979-8366
www.info@arthritis.ca
??konecny@arthritis.ca
1,2,6,8; French materials

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
www.sonnet.com/avenues
??avenues@sonnet.com
1,2,3,4

CAST: Canadian Arthrogryposis
Support Team
365 Fiddler's Green Rd. S.
Ancaster, ON CAN, L9G 1X2
(905) 648-2007
??cast@freenet.hamilton.on.ca
1,2,3,4,5

ASCENDING PARAYLSIS

See: Guillain-Barre Syndrome

ASPERGER SYNDROME

See: Autism

ASTHMA

See: Asthma & Allergy

ASTHMA & ALLERGY

See also: Food Allergy; Latex Allergy;
Lung Diseases

Allergy/Asthma
Information Association
30 Eglinton Ave. W., Ste. 750
Mississauga, ON CAN L5R 3E7
(905) 712-2242
(905) 712-2245 (fax)
1,2,4,5,6,7,9; French materials

Allergy and Asthma Network
Mothers of Asthmatics, Inc.
2751 Prosperity Ave., Ste. 150
Fairfax, VA 22031-4397
(800) 878-4403
(703) 641-9595
(703) 573-7794 (fax)
www.aanma.org
??aanma@aol.com
1,2,3,4,6

Asthma and Allergy Foundation
of America
1125 15th St. NW, Ste. 502
Washington, DC 20005
(800) 727-8462
(202) 466-7643
(202) 466-8940 (fax)
www.aafa.org
??info@aafa.org
1,2,3,4,5,7,8; Spanish materials

Asthma Society of Canada
130 Bridgeland Ave., Ste. 425
Toronto, ON CAN M6A 1Z4
(416) 787-4050
(416) 787-5807 (fax)
1,2,3,4,8

ATAXIA

See also: Ataxia Telangiectasia;
Charcot-Marie-Tooth Disease;
Friedreich Ataxia; Von Hippel-Lindau
Syndrome

National Ataxia Foundation
2600 Fernbrook Ln., Ste. 119
Plymouth, MN 55447-4752
(612) 553-0020
(612) 553-0167
www.ataxia.org
??naf@mr.net
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
1W Camino Gardens Blvd., Ste. 212
Boca Raton, FL 33432-5966
(800) 543-5728
(561) 395-2621
(561) 395-2640 (fax)
www.med.jhu.edu/ataxia/
??betsy@atcp.org
??rosa@atcp.org;
??bradmargus@atcp.org
2,3,4,5,6,8,9

ATAXIA WITH LACTIC
ACIDOSIS II

See: Ataxia; Leigh Disease

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
(978) 535-3276 (info)
??koplow@grs.net
1,2,4; prescription drug
discount program

AD-IN: Attention Deficit
Information Network
475 Hillside Ave.
Needham, MA 02194
(617) 455-9895
(781) 444-5466 (fax)
www.infonetwork.com
??adin@gis.net
2,3,4,5,6,9

CHADD--Canada, Inc.
Children and Adults with
Attention Deficit Disorder
1376 Bank St., Ste. 214
Ottawa, ON CAN K1H 1B3
(613) 631-1209
(613) 257-1563 (fax)
www.tripod.com/~chaddcanadaindexhtml
??dty mada@concentric.net
1,2,3,4,5,6,7,9

CHADD: Children and Adults
with Attention Deficit Disorders
499 NW 70th Ave., Ste. 101
Plantation, FL 33317
(800) 233-4050
(305) 587-3700
(305) 587-4599 (fax)
www.Chadd.org
??national@Chadd.org
1,2,3,5,6,9; Spanish materials

National ADD Association
PO Box 972
Mentor, OH 44061
(800) 487-2282
(440) 350-9595
(440) 350-0223 (fax)
www.add.org
??NATLADDA@aol.com
1,2,4,6

AURICULO-OCULO-VERTEBRAL SYNDROME

See: Goldenhar Syndrome

AUTISM

See also: Autism and Sensory
Impairments; Language Disorders

Autism Research Institute
4182 Adams Ave.
San Diego, CA 92116
(619) 281-7165
(619) 563-6840 (fax)
www.autism.com/autism
1,2,4,9

Autism Society of America
7910 Woodmont Ave., Ste. 650
Bethesda, MD 20814
(800) 328-8476
(301) 657-0881
(301) 657-0869 (fax)
www.autism-society.org/
1,2,4,5,6,7,8; Spanish/French/
Vietnamese/Chinese materials

Autism Society of Canada
129 Yorkville Ave., #202
Toronto, ON CAN M5R 1C4
(416) 922-0302 (voice/fax)
(416) 922-1032 (fax)
1,2,4,7; French materials

Center for Study of Autism
PO Box 4538
Salem, OR 97005
(503) 363-9110 (voice/fax)
www.autism.org/
??autism@euphora.com
2,6

More Advanced Autistic People
PO Box 524
Crown Point, IN 46307
(219) 662-1311
(219) 662-0638 (fax)
??chart@netnitco.net
1,2,4,6

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)
1,2,3,4,5,7; Spanish/Italian/
French materials

AUTISM AND
SENSORY IMPAIRMENTS

See also: Hearing Impairments;
Language Disorders; Visual Impairments

The Autism Network for Hearing
& Visually Impaired Persons
c/o Dolores and Alan Bartel
7510 Oceanfront Ave.
Virginia Beach. VA 23451
(804) 428-9036
(804) 428-0019 (fax)
3,4,7,9

AUTOIMMUNE DISORDERS

See also: Immune Disorders; Vitiligo

American Autoimmune Related
Diseases Association
Michigan National Bank Bldg.
15475 Gratiot Ave.
Detroit, MI 48205
(313) 371-8600
(800) 598-4668
www.aarda.org
??aarda@aol.com
1,2,4,8

AUTOIMMUNE MYOCARDITIS

See: Autoimmune Disorders

AVM

See: Arteriovenous Malformations (AVMs)

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/TTY)
(615) 329-7807
(615) 329-7935 (fax)
www.theearfound.org
??tyiear@aol.com
1,2,3,4,5

BANNAYAN, RUVALCABA,
RILEY-SMITH SYNDROME

See: Sotos Syndrome

BARDET-BIEDL SYNDROME

See: Laurence-Moon-Bardet-Biedl
Syndrome

BATTEN DISEASE

See also: Tay-Sachs Disease

Batten's Disease Support and
Research Association
2600 Parsons Ave.
Columbus, OH 43207
(800) 448-4570
(614) 927-7551
www.infolane.com/bdsra
??bdsra1@bdsra.com
1,2,3,4,5,6,8,9; Spanish/Portugese/
German/French materials

Batten Disease Support
and Research Association,
Canadian Chapter
c/o Bev Maxim
17 Bell St.
Regina, SK CAN S4S 4B7
(306) 789-9047
vwwv.bdsra.org
??bdsra1@bdsra.org
1,2,3,4,5,6,7,8,9

Children's Brain
Diseases Foundation
350 Pamassus Ave., Ste. 900
San Francisco, CA 94117
(415) 566-5402
(415) 565-6259
(415) 863-3452 (fax)
2,8

National Batten Disease Registry
1050 Forest Hill Rd.
Staten Island, NY 10314-6399
(800) 952-9628
(718) 494-5201
(718) 982-6346 (fax)
??dockteeb@nyucomr.em1.com
2,3,4,5,6,8,9; genetic counseling,
diagnostic testing

BATTEN-MAYOU SYNDROME

See: Batten Disease

BATTEN-SPIELMEYER-VOGT
DISEASE

See: Batten Disease

BATTEN-VOGT SYNDROME

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
3206 Braebum Cir.
Ann Arbor, MI 48108
(800) 837-2976 (Parents only)
(734) 973-0263
(734) 973-9721 (fax)
??A800BWSN@aol.com
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
??BellsPalsy@aol.com
2,3,4,8,9

BENIGN CONGENITAL HYPOTONIA

See: Spinal Muscular Atrophy

BEREAVEMENT SUPPORT

Center for Loss in Multiple Birth
PO Box 1064
Palmer, AK 99645-1064
(907) 746-6123
??climb@pabox.alaska.net
1,2,3,4,7

Compassionate Friends
PO Box 3696
Oak Brook, IL 60522-3696
(630) 990-0010
(630) 990-0246 (fax)
www.compassionatefriends.org
??tcf_national@prodigy.com
1,2,3,4,5,6; Spanish materials

Pen-Parents
PO Box 8738
Reno, NV 89507-8738
(702) 826-7332
(702) 826-0632 (fax)
www.pages.prodigy.com/nv/fgck08
a/penparents.html
??Penparents@prodigy.com
1,2,3,4

Pregnancy and Infant
Loss Center
1421 East Wayzata Blvd., #30
Wayzata, MN 55391
(612) 473-9372
(612) 473-8978 (fax)
1,2,4; Spanish materials

BETA THALASSEMIA MAJOR

See: Cooley Anemia

BEUREN SYNDROME

See: Williams Syndrome

BIOTINIDASE DEFICIENCY

See: Metabolic Disorders

BIRTHMARK

See: Nevi, Giant Congenital;
Vascular Malformations

BLEEDING DISORDERS

See: Hemophilia

BLEPHAROPHIMOSIS, PTOSIS,
EPICANTHUS INVERSUS
SYNDROME (BPES)

See also: Craniofacial Disorders

Blepharophimosis, Ptosis,
Epicanthus Inversus
Support Group
c/o Lynne Schauble
SE 820 Meadow Vale Dr.
Pullman, WA 99163
(509) 332-6628
??schauble@wsu.edu
1,2,3,7,9

BLEPHAROSPASM

See: Dystonia

BLINDNESS

See: Visual Impairments

BLOCH-SIEMENS-SULZBERGER SYNDROME

See: Incontinentia Pigmenti

BLOCH-SULZBERGER SYNDROME

See: Incontinentia Pigmenti

BLOOD VESSEL MALFORMATIONS

See: Vascular Malformations

BLOOM SYNDROME

See also: Cancer; Immune Disorders;
Growth Disorders; Short Stature

Bloom Syndrome Registry
Laboratory of Human Genetics
NY Blood Ctr.
310 E. - 67th St.
New York, NY 10021
(212) 570-3075
(212) 570-3376
(212) 570-3195 (fax)
??mproytch@server.nybc.org
8

BONE MARROW TRANSPLANT

See also: Cancer

BMT Newsletter
1985 Spruce Ave.
Highland Park, IL 60035
(847) 831-1913
(847) 831-1943 (fax)
www.bmtnews.org
??bmtsnews@transit.nyser.net
1,2,3,9; legal referral for
insurance problems

BONE TUMOR-EPIDERMOID
CYST-POLYPOSIS

See: Peutz-Jeghers Syndrome; Polyposis

BONNEVIE-ULRICH SYNDROME

See: Turner Syndrome

BOOK SYNDROME

See: Ectodermal Dysplasias

BOURNEVILLE PRINGLE
SYNDROME

See: Tuberous Sclerosis

BOWEL DYSFUNCTION

See also: Gastrointestinal Disorders

International Foundation for
Functional Gastrointestinal
Disorders (IFFGD)
PO Box 17864
Milwaukee, WI 53217
(888) 964-2001
(414) 964-1799
(414) 964-7176 (fax)
www.iffgd.org
??IFFGD@iffgd.org
1,2,4,6,9

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
105 N. Alfred St.
Alexandria, VA 22314
(800) 444-6443 (family helpline)
(703) 236-6000
(703) 236-6001 (fax)
www.biausa.org
1,2,3,4,5,6,7; Spanish materials

BRAIN STEM MALFORMATIONS

See: Arnold-Chiari Malformation;
Joubert Syndrome; Syringomyelia

BRAIN TUMORS

See also: Acousbc Neuroma; Brain
Injury; Cancer; Epilepsy; Pituitary
Disorders; 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)
www.abta.org
??info@abta.org
1,2,3,4,6,7,8; Spanish materials

Brain Tumor Foundation
of Canada
650 Watedoo St., Ste. 100
London, ON CAN N6B 2R4
(519) 642-7755
(519) 642-7192 (fax)
oncolink.upenn.edu/disease/brain/bt
fc/btfcped.html
??eallmanl@juno.com
1,2,3,4,6,8,9; French materials

Brain Tumor Foundation
for Children
2231 Perimeter Park Dr., Ste. 9
Atlanta, GA 30341
(770) 458-5554
(770) 458-5467 (fax)
??eallman1@juno.com
1,2,3,4,7,8

Brain Tumor Society
84 Seattle St.
Boston, MA 02134-1245
(800) 770-8287
(617) 783-0340
(617) 783-9712 (fax)
www.tbts.com
??info@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
(212) 448-1022 (fax)
peds-neuro-web.med.nyu.edu/cbtf
/cbff_hp.htm
1,2,3,4,6,8

National Brain Tumor Foundation
Cathy Clarence
785 Market St., Ste. 1600
San Francisco, CA 94103
(800) 934-2873 (info line)
(415) 284-0208
(415) 284-0209 (fax)
www.braintumor.org
??nbt@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
33 Main St., Ste. 403
Nashua, NH 03060
(800) 888-2876
(603) 889-3000
(603) 889-4688 (fax)
www. bums-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: Leukodjstrophy; Tay-Sachs Disease

CANCER

See also: Bone Marrow Transplant;
Brain Tumors; Leukemia; Polyposis

American Cancer Society
1599 Clifton Rd. NE
Atlanta, GA 30329-4251
(800) 227-2345
(404) 320-3333
(404) 982-3676
www.cancer.org
2,4,5,7,8; Spanish materials

Canadian Cancer Society
10 Alcom Ave., Ste. 200
Toronto, ON CAN M4V 3B1
(416) 961-7223
(416) 961-4189 (fax)
www.cancer.ca
??lfernand@cancer.ca
1,2,3,4,5,7,8; French materials

Candlelighters Childhood
Cancer Foundation
55 Eglinton Ave. E., Ste. 401
Toronto, ON CAN M4P 1G8
(800) 363-1062 (Canada only)
(416) 489-6440
(416) 489-9812 (fax)
www.candlelighters.ca
??staff@candlelighters.ca
1,2,3,4,5,6,7;
French/Polish/German materials

CANCER; BRAIN

See: Brain Tumors

CANCER; GASTROINTESTINAL

See: Peutz-Jeghers Syndrome;

CARBAMYL PHOSPHATE
SYNTHETASE (CPS) DEFICIENCY

See: Urea Cycle Disorders

CARDIAC DISORDERS

See: Heart Disorders

CARDIO-FACIO-CUTANEOUS SYNDROME

See also: Heart Disorders; Ichthyosis

CFC Support Network
183 Brown Rd.
Vestel, NY 13850
(607) 772-9666
(607) 748-0409 (fax)
??cliffordlV@juno.com
1,3,9

CAREY SYNDROME

See: Ectodermal Dysplasias

CARNITINE DEFICIENCY
SYNDROMES

See also: Acidemia, Organic; Fatty
Oxidabon Disorder, Muscular Dystrophy

Assistance for Babies and
Children with Carnitine
Deficiency--ABCD Inc.
1010 Jorie Blvd., Ste. 234
Oak Brook, IL 60521
(800) 554-2223
(630) 571-9608
(630) 472-1744 (fax)
1,2,3,4,7,8,9

CARNITINE PALMITYL
TRANSFERASE DEFICIENCY

See: Acidemia, Organic; Fatty Oxidation
Disorder; Camitine Deficiency
Syndromes; Muscular Dystrophy

CARPENTER SYNDROME

See also: Craniofacial Disorders

Carpenter Syndrome Network
c/o Cathy Sponsler
26661 Bear Valley Rd.
Tehachapi, CA 93561
??carpenter.syndrome@php.com
1,3,4,6

CARTILAGE-HAIR HYPOPLASIA

See: Dwarfism; Growth Disorders;
Short Stature

CARTILAGNOUS
ENCHONDROSES, MULTIPLE

See: Oilier Disease

CAT'S CRY SYNDROME

See: Cri Du Chat Syndrome

CAUSALGIA SYNDROME

See: Reflex Sympathetic
Dystrophy Syndrome

CELIAC DISEASE

See also: Celiac Sprue; GlCen Intolerance

Canadian Celiac Association
190 Britannia Rd. E., Unit 11
Mississauga, ON CAN L4Z 1W6
(905) 507-6208
(905) 507-4673 (fax)
1,2,4,5,6,7,8,9; French materials

Celiac Disease Foundation
13251 Ventura Blvd., #1 Studio City
Los Angeles, CA 91604-1838
(818) 990-2354
(818) 990-2379 (fax)
www.celiac.org/cdf
??cdf@primenet.com
1,2,3,4,9

CELIAC SPRUE

See also: Celiac Disease;
Gluten Intolerance

American Celiac Society
58 Musano Ct.
West Orange, NJ 07052
(973) 325-8837
(973) 669-8808 (fax)
1,2,4,5,6; speakers bureau

American Celiac Society Dietary
Support Coalition
58 Musana Ct.
West Orange, NJ 07052
(201) 325-8837
(973) 669-8808 (fax)
??bentleac@umdnj.edu
1,2,3,4,5,7,8

Celiac Sprue Association
PO Box 31700
Omaha, NE 68131-0700
(402) 558-0600
(402) 558-1347 (fax)
??celiacusa@aol.com
1,2,3,4,5,6,8

CENTRAL HYPOVENTILATION
SYNDROME, CONGENITAL

See also: Apnea, Sleep; Intestinal
Pseudo-Obstruction Syndrome;
Ventilator Use

Congenital Central
Hypoventilation Syndrome
Parent Network
71 Maple St.
Oneonta, NY 13820
??vanderlaanm@hartwick.edu
1,2,3,6,7,9

CEREBELLAR HYPOPLASIA

See: Joubert Syndrome

CEREBELLAR VERMIS
APLASIA/HYPOPLASIA

See: Joubert Syndrome

CEREBELLO-OCULOCUTANEOUS
TELANGIECTASIA

See: Ataxia Telangiectasia

CEREBELLORETINAL
HEMANGIOBLASTOMATOSIS

See: Von Hippel-Lindau Syndrome

CEREBRAL GIGANTISM

See: Sotos Syndrome

CEREBRAL PALSY

Ontario Federation for
Cerebral Palsy
1630 Lawrence Ave. W., Ste. 104
Toronto, ON CAN M6L 1C5
(416) 244-8003
(416) 244-6543 (fax)
www.ofcp.on.ca
??ofcp@ofcp.on.ca
1,2,3, 4,5,6,9; French materials

United Cerebral Palsy Associations
1660 L St. NW, Ste. 700
Washington, DC 20036-5602
(800) 872-5827
(202) 776-0406
(202) 973-7197 (TTY)
(202) 776-0414 (fax)
www.ucpa.org
??ucpainc@aol.com
1,2,3,4,5,6,7,8; Spanish
materials, provides direct services
through 158 affiliate programs

CEREBR00CULORENAL
DYSTROPHY

See: Lowe Syndrome

CEREBROSIDE LIPIDOSIS

See: Gaucher Disease

CEREBROTENDINOUS

See: Xanthomatosis Leukodystrophy;
Tay-Sachs Disease

CHAGAS' DISEASE

See: Autoimmune Disorders

CHALASODERMIA

See: Connective Tissue Disorders

CHANARIN-DORFMAN SYNDROME

See: Ichthyosis

CHANDS ASSOCIATION

See: Ectodermal Dysplasias

CHARCOT-MARIE-TOOTH DISEASE

See also: Ataxia; Muscular
Dystrophy; Myelin Disorders

Charcot-Marie-Tooth Association
601 Upland Ave.
Upland, PA 19015
(800) 606-2682
(610) 499-7486
(610) 499-7487 (fax)
www.charcot-marie-tooth.org
??cmtassoc@aol.com
1,2,4,6,8,9, Spanish materials

Charcot-Marie-Tooth International
1 Springbank Dr.
St Catharines, ON CAN L2S 2K1
(905) 687-3630
(905) 687-8753 (fax)
www.cmtint.org
??cmtint@vaxxine.com
1,2,3,4,8,9; scholarship program

CHARGE ASSOCIATION

See also: DiGeorge Syndrome; Heart
Disorders; Hearing Impairments
Velo-Cardio-Facial Syndrome;
VATERL Association; Visual Impairments

CHARGE Syndrome Foundation
2004 Parkade Blvd.
Columbia, MO 65202-3121
(800) 442-7604
(573) 499-4694 (voice/fax)
www.chargesyndrome.org
??marion@chargesyndrome.org
1,2,3,4,6,8

CHEMKE SYNDROME

See: Hydrocephalus; Lissencephaly

CHIARI MALFORMATION

See: Arnold-Chiari Malformation

CHILD SYNDROME

See: Ichthyosis

CHOLESTATIS WITH PERIPHERAL
PULMONARY STENOSIS

See: Alagille Syndrome

CHOLESTERYL ESTER
STORAGE DISEASE

See: Tay-Sachs Disease

CHONDRODYSPLASIA PUNCTATA

See: Growth Disorders; Ichthyosis

CHONDRODYSTROPHY,
HYPERPLASTIC

See: Dwarfism, Metatrophic

CHORIONIC VILLUS SAMPLING,
RELATED DISABILITIES

See also: Limb Disorders

CVS Parent Network
Support Group
15706 Reynolds Ln.
Oak Forest, IL 60452
(708) 535-2864
??midsun@aol.com
1,2,3,4,7,9

CHOROIDEREMIA

See: Macular Diseases; Retinitis
Pigmentosa; Visual Impairments

CHRIST-SIEMENS-TOURAINE SYNDROME

See: Craniofacial Disorders;
Ectodermal Dysplasias

CHROMOSOME 13 &
18 DISORDERS

See also: Chromosome 18 Disorders

SOFT Canada: Support
Organization for Trisomy 18,13
and Related Disorders
760 Brant St., Ste. 420
Burlington, ON CAN L7R 4B8
(800) 668-0898 (Canada only)
(905) 632-7755
(905) 632-5997 (fax)
www.trisomy.org
??barbsoft@aol.com
1,2,3,4,5,6,8,9; also covers other
rare trisomy disorders

SOFT: Support Organization for
Trisomy 18,13 and
Related Disorders
2982 S Union St.
Rochester, NY 14624
(800) 716-7638
(716) 594-4621 (voice/fax)
www.trisomy.org
??barbsoft@aol.com
1,2,3,5,6,9; also covers other
rare trisomy disorders

CHROMOSOME 17P-

See: Smith-Magenis Syndrome

CHROMOSOME 18 DISORDERS

See also: Chromosome 13 & 18 Disorders

Chromosome 18 Registry &
Research Society
6302 Fox Head
San Antonio, TX 78247
(210) 657-4968 (voice/fax)
chr18.uthscsa.edu
??CODY@UTHSCSA.EDU
1,3,6,8,9

CHROMOSOME 21 RING

See: Chromosome Deletions

CHROMOSOME 22 RING

See: Chromosome Deletions

CHROMOSOME 3, MONOSOMY 3P2

See: Chromosome Deletions

CHROMOSOME 4 RING

See: Chromosome Deletions; Wolf-Hirschhom Syndrome

CHROMOSOME 45, X

See: Turner Syndrome

CHROMOSOME 45, X/46, XX

See: Turner Syndrome

CHROMOSOME 46XY/47, XXY

See: Klinefelter Syndrome

CHROMOSOME 47, XXY

See: Klinefelter Syndrome

CHROMOSOME 47, XYY

See: Klinefelter Syndrome

CHROMOSOME 48, XXXY

See: Klinefelter Syndrome

CHROMOSOME 48, XXYY

See: Klinefelter Syndrome

CHROMOSOME 49, XXXXY

See: Klinefelter Syndrome

CHROMOSOME 4P-

See: Wolf-Hirshhorn Syndrome

CHROMOSOME 5P-

See: Cri Du Chat Syndrome

CHROMOSOME 8P DISORDERS

8p Duplication Support Group
Genetics Ctr.
Children's Medical Ctr.
1 Children's Plaza
Dayton, OH 45404
(937) 226-8408
(937) 463-5325 (fax)
??genemail@aol.com
3,4,9

CHROMOSOME 9 DISORDERS

Support Group for Monosomy 9p
43304 Kipton Nickle Plate Rd.
La Grange, OH 44050
(440) 775-4255
3

Trisomy 9 International
Parent Support
Children's Hospital of Michigan
3901 Beaubien Blvd.
Detroit, MI 48201-2196
(313) 745-4513
(313) 745-4827 (fax)
2,3

CHROMOSOME 9 RING

See: Chromosome Deletions;
Craniofacial Disorders

CHROMOSOME DELETIONS

Chromosome Deletion Outreach
Box 724
Boca Raton, FL 33429-0724
(561) 391-5098
(561) 395-4252 (fax)
??cdo@worldnet.att.net
1,3,4,9; also deals with
chromosome translocations

CHROMOSOME DISORDERS

See also: Chromosome 13& 18 Disorders

International 11; 22 Translocation
Network: Chromosome 22 Central
22 Kent Ave.
Timmin, ON CAN P4N 3C3
(705) 268-3099 (voice/fax)
www.nt.net/~a815/chr22.htm
??mum2_l@hotmail.com

CHROMOSOME INVERSIONS

National Center on
Chromosome Inversions
1029 Johnson St.
Des Moines, IA 50315
(515) 287-6798 (voice/fax)
??ncfci@msn.com
3,9

CHROMOSOME TRANSLOCATIONS

See: Chromosome Deletions

CHROMOSOME TRISOMY
DISORDERS

See: Chromosome 13 & 18 Disorders

CHRONIC ENCEPHALITIS
& EPILEPSY

See: Rasmussen Syndrome

CHRONIC FATIGUE SYNDROME

CIFDS Association of America
CIFDS Youth Alliance
PO Box 220398
Charlotte, NC 28222-0398
(800) 442-3437
(704) 365-9755 (fax)
www.cfids.org
??info@cfdis.org
1,2,4,7,8

CHRONIC INFLAMMATORY
DEMYELINATING
POLYNEUROPATHY

See: Autoimmune Disorders

CHRONIC INFLAMMATORY
DEMYELINATING
POLYRADICULONEUROPATHY

See: Guillain-Barre Syndrome

CHRONIC LOCALIZED
ENCEPHALITIS

See: Rasmussen Syndrome

CITRULUNEMIA

See: Urea Cycle Disorders

CLEFT PALATE

See also: Craniofacial Disorders

Cleft Palate Foundation
1829 E. Franklin St., Ste. 1022
Chapel Hill, NC 27514
(800) 242-5338
(919) 933-9044
(919) 933-9604 (fax)
www.cleft.com
??cleftline@aol.com
2,4; Spanish materials

CMV, CONGENITAL

See: Cytomegalovirus (CMV), Congenial

COBALAMIN (B12) DEFIENCY

See also: Metabolic Disorders

Cobalamin Network
PO Box 174
Thetford Center, VT 05075-0174
(802) 785-4029
??suebee18@valley.net
3

COCKAYNE SYNDROME


See also: Growth Disorders;
Xeroderma Pigmentosum

Share and Care Cockayne
Syndrome Network
c/o Teresa Wall
PO Box 552
Stanleytown, VA 24168-0552
(540) 629-2369
(540) 647-3739 (fax)
??cockayne@kirnbanet.com
1,2,3,9; Spanish and
Japanese materials

COFFIM-SIRIS'S SYNDROME

See: Ectodermal Dysplasias

COFFIN-LOWRY SYNDROME

Coffin-Lowry Syndrome Foundation
13827 196th Ave. SE
Renton, WA 98059
(425) 204-9176
www.freeyellowcom/members
/clsf/index.html
??clsfoundation@yahoo.com
1,2,3,9

COGAN'S SYNDROME

See: Autoimmune Disorders

COLITIS

See: Crohn Disease & Colitis

COLOBOMA

See: Visual Impairments

COMPLEX REGIONAL
PAIN SYNDROME

See: Reflex Sympathetic
Dystrophy Syndrome

CONGENITAL SENSORY
NEUROPATHY WITH ANHIDROSIS

See: Familial Dysautonomia

CONNECTIVE TISSUE DISORDERS

See also: Ehlers-Danlos Syndrome;
Epidermolysis Bullosa, Dystrophic;
Marfan Syndrome; Pseudoxanthoma
Elasticum (PXE)

Coalition for Heritable Disorders
of Connective Tissue
382 Main St.
Port Washington, NY 11050
(800) 862-7326
(516) 883-8712
(516) 883-8040 (fax)
www.marfan.org
??staff@marfan.org
2,7

CONRADI-HUNERMANN
SYNDROME

See: Growth Disorders; Ichthyosis

COOLEY ANEMIA

See also: Autoimmune Disorders

Cooley's Anemia Foundation
12909 26th Ave., #203
Flushing, NY 11354
(800) 522-7222
(718) 321-2873
(718) 321-3340 (fax)
www.thalassemia.org
??nacf@aol.com
1,2,3,4,5,6,7,8,9; Italian/Greek/
Chinese materials

Thalassemia Action Group
12909 26th Ave., Ste. 203
Flushing, NY 11354
(800) 522-7222
(718) 321-2873
(718) 321-3340 (fax)
??ncaf@aol.com
1,2,3,4,5,6,7,8,9

Thalassemia Foundation
32 Fern Ave.
Weston, Ontario CAN M9N 1M2
(416) 242-8425
??josie.sirna@utoronto.ca
1,2,3,4,5,6,8,9

COPPER DEFICIENCY,
X-LINKED

See: Menkes Disease

COPPER MALABSORPTION,
X-LINKED

See: Menkes Disease

CORI DISEASE

See: Glycogen Storage Diseases;
Muscular Dystrophy

CORNELIA DE LANGE SYNDROME

Cornelia de Lange
Syndrome Foundation
302 W. Main St. #100
Avon, CT 06001-3681
(800) 223-8355
(860) 676-8166
(860) 676-8337 (fax)
www.cdlsoutreach.org
??cdlsintl@iconn.net
1,2,3,4,6,9; professional network

CORPUS CALLOSUM DISORDERS

See: Agenesis of the Corpus
Callosum; Aicardi Syndrome

COX DEFICIENCY

See: Leigh Disease

CRANIOCAPPOTARSAL DYSTROPHY

See: Freeman-Sheldon Syndrome

CRANIOECTODERMAL SYNDROME

See: Ectodermal Dysplasias

CRANIOFACIAL DISORDERS

See also: Apert Syndrome;
Blepharophimosis, Ptosis, Epicanthus
Inversus Syndrome (BPES);
Carpenter Syndrome; Cleft Palate;
Dubowitz Syndrome; Freeman-Sheldon
Syndrome; Goldenhar
Syndrome; Holoprosencephaly;
Microtia, Moebius Syndrome; Nager
& Miller Syndromes; Nevi, Giant
Congenital; Robinow Syndrome;
Rubinstein-Taybi Syndrome; Sturge-Weber
Syndrome; Treacher Collins
Syndrome; Veto-Cardio-Facial Syndrome

AboutFace International
99 Crowns Ln., 4th Fl.
Toronto, ON CAN M5R 3P4
(800) 665-3223
(416) 944-3223
(416) 944-2488 (fax)
www.interlog.com/abtface
??abtface@interlog.com
1,2,3,4,5,6,7

Children's Craniofacial Association
PO Box 280297
Dallas, TX 75228
(800) 535-3643
(972) 994-9902
(972) 240-7607(fax)
www.masterlink.com\children
??dnkm90@prodigy.com
1,2,3,4,5,6,9; Spanish materials,
financial assistance for related
expenses, annual family retreat

Craniofacial Foundation of America
c/o Terri Farmer
975 E. Third St.
Chattanooga, TN 37403
(800) 418-3223
(423) 778-9192
(423) 778-8172 (fax)
pages.prodigy.com/cranio/facial.htm
??dnkm90@prodigy.com
1,2,3,4,7

FACES-National Association for
the Craniofacially Handicapped
PO Box 11082
Chattanooga, TN 37401
(800) 332-2373
(423) 267-3124
1,2,3,4,7,9; financial assistance
for medical-related travel

Forward Face: The Charity
for Children with
Craniofacial Conditions
Inst. of Reconstructive Plastic Surgery
317 34th St., Rm. 901A
New York, NY 10016
(800) 393-3223
(212) 684-5860
(212) 684-5864 (fax)
1,2,3,4

Let's Face It
PO Box 29972
Bellingham, WA 98228-1972
(360) 676-7325
www.faceit.org/~faceit/
??letsfaceit@faceit.org
1,3,7; publishes annual
resource guide

National Foundation for
Facial Reconstruction
317 E. 34th St., Rm. 901
New York, NY 10016
(800) 422-3233
(212) 263-6656
(212) 263-7534 (fax)
2,3,4,8,9

CRANIOSYNOSTOSIS

See: Craniofacial Disorders

CRI DU CHAT SYNDROME
5p- Society
7108 Katella #502
Stanton, CA 90680
(888) 970-0777
(714) 901-1544
(714) 890-9850
www.fiveminus.org
??fivepminus@aol.com
1,2,3,6,7,9

CRIB DEATH

See: Sudden Infant Death
Syndrome (SIDS)

CRIGLER-NAJJAR

See: Liver Disease and Trasplant

CROHN DISEASE & COLITIS

CCFA: Crohn's & Colitis
Foundation of America
386 Park Ave. S., 17th Fl.
New York, NY 10016-8804
(800) 932-2423
(212) 685-3440
(212) 779-4098 (fax)
www.ccfa.org
??info@ccfa.org
1,2,4,5,7,8; Spanish materials

Crohn's and Colitis Foundation
of Canada
21 St. Clair Ave. E., Ste. 301
Toronto, ON CAN M4T 1L9
(800) 387-1479 (CAN only)
(416) 920-5035
(416) 929-0364 (fax)
www.ccfc.ca
??ccfc@netcom.ca
1,2,5,6,8,9; French materials

Pediatric Crohn's &
Colitis Association
PO Box 188
Newton, MA 02168
(617) 489-5854 (voice/fax)
1,2,3,4,7,8

CURLY HAIR-ANKYLOBLEPHARON-NAIL
DYSPLASIA (CHANDS)

See: Ectodermal Dysplasias

CUSHING SYNDROME

See: Adrenal Disorders

CUTIS HYPERELASTICA

See: Ehlers-Danlos Syndrome

CUTIS LAXA

See: Connective Tissue Disorders

CYCLIC VOMITING SYNDROME

Cyclic Vomiting
Syndrome Association
13180 Caroline Ct.
Elm Grove, WI 53122
(414) 784-6842
(414) 821-5494 (fax)
ezinfo.ucs.indiana.edu/~jdbickel/
cus.html
??kadams@mcw.edu
1,2,3,4,5,6,8,9

CYSTIC FIBROSIS

Canadian Cystic Fibrosis Foundation
2221 Yonge St., Ste. 601
Toronto, ON CAN M4S 2B4
(800) 378-2233 (Canada only)
(416) 485-9149
(416) 485-0960 (fax)
www.ccff.ca/~cfwww/index.html
1,2,5,6,7,8,9; French materials

CYSTINOSIS

See also: Kidney Disorders
Cystinosis Foundation
2516 Stockbridge Dr.
Oakland, CA 94611
(800) 392-8458
(510) 482-8119
www.cystinosisfoundation.ucsd.edu
??jd2jptz@qmis.net
1,2,3,6,7,8, Italian and
French materials

CYSTINURIA

See also: Kidney Disorders
Cystinuria Support Network
21001 NE 36th St.
Redmond, WA 98053
(425) 868-2996
??cystinuria@aol.com
1,3,9

CYTOCHROME C OXIDASE
(COX) DEFICIENCY

See: Leigh Disease,
Mitochondrial Disorders

CYTOMEGALOVIRUS (CMV),
CONGENITAL

Clinical Care Center
CMV Registry, Ste. 1150
1102 Bates St.
Houston, TX 77030-2399
(713) 770-4387
(713) 770-4347 (fax)
??cmv@bcm.tmc.edu
1,2,3,4

DARIER DISEASE

See: Ichthyosis

DE BARSEY SYNDROME

See: Connective Tissue Disorders

DE BARSEY-MOENS-DIERCKS SYNDROME

See: Connective Tissue Disorders

DE MORSIER SYNDROME

See: Septo-Optic Dysplasia

DEAF-BLIND

See also: Hearing Impairments;
Visual Impairments

American Association of the
Deaf-Blind
814 Thayer Ave., Ste. 302
Silver Spring, MD 20910
(301) 588-6545 (TTY only)
(301) 588-8705 (fax)
1,2,6,7

The Canadian Deafblind and
Rubella Association
c/o The W Ross Macdonald School
350 Brant Ave.
Brantford, ON CAN N3T 3J9
(519) 754-0729
(519) 754-5400 (fax)
1,2,7

National Family Association for
Deaf-Blind
111 Middle Neck Rd.
Sands Point, NY 11050
(800) 255-0411, ext. 275
(516) 944-8637 (TTY)
(516) 944-7302 (fax)
www.helenkeller.org
??hkncdir@aol.com
1,3,4,7

DEAFNESS

See: Hearing Impairments

DEATH

See: Bereavement Support

DEBRANCHER ENZYME
DEFICIENCY

See: Glycogen Storage Diseases;
Muscular Dystrophy

DECARBOXYLICACIDURIA

See: Fatty Oxidation Disorder

DECEREBRATE DEMENTIA

See: Subacute Sclerosing Panencephalitis

DEJERINE SOTTAS DISEASE

See: Muscular Dystrophy

DEJERINE-LANDOUZY

See: Muscular Dystrophy; Facio-Scapulo-Humeral

DELTA STORAGE POOL DISEASE

See: Hermansky-Pudlak Syndrome

DENTOOCULOCUTANEOUS
SYNDROME

See: Ectodermal Dysplasias

DERMATITIS HERPETIFORMIS

See: Celiac Disease; Celiac Sprue;
Gluten Intolerance

DERMATOCHALASIA

See: Connective Tissue Disorders

DERMATOLYSIS

See: Connective Tissue Disorders

DERMATOMEGALY

See: Connective Tissue Disorders

DERMATOMYOSITIS

See: Arthritis; Muscular
Dystrophy; Myositis

DERMOODONTODYSPLASIA

See: Ectodermal Dysplasias

DERMOTRICHIC SYNDROME

See: Ectodermal Dysplasias

DEVELOPMENTAL DISABILITIES

See: Mental Retardation

DIABETES INSIPIDUS

See also: Autoimmune Disorders

The Diabetes Insipidus
Foundation Inc.
4533 Ridge Dr.
Baltimore, MD 21229
(410) 247-3953

DIABETES MELLITUS

See also: Autoimmune Disorders;
Kidney Disorders

American Diabetes Association
National Service Ctr.
1660 Duke St.
Alexandria, VA 22314
(800) 342-2383
(703) 549-1500
(703) 549-6995 (fax)
www.diabetes.org
1,2,4,5,6,7,8

DIABETES MELLITUS

See also: Kidney Disorders

Canadian Diabetes Association
15 Toronto St., Ste. 1001
Toronto, ON CAN M5C 2E3
(416) 363-3373
(416) 363-3393 (fax)
www.diabetes.ca
??info@eda-nat.org
1,2,4,6,7,8; French materials

DIAPHYSEAL ACLASIS

See: Exostoses, Multiple Hereditary

DIGESTIVE DISORDERS

See: Celiac Disease; Celiac Sprue;
Crohn Disease & Colitis; Gluten
Intolerance; Intestinal Pseudo-Obstruction
Syndrome; Ostomy

DIGESTIVE DYSMOTILITY

See: Intestinal Pseudo-Obstruction
Syndrome

DIMORSIER SYNDROME

See: Growth Disorders

DISCOID LUPUS

See: Autoimmune Disorders

DOWN SYNDROME

Association for Children with
Down Syndrome
2616 Martin Ave.
Bellmore, NY 11710
(516) 221-4700
(516) 221-5867 (fax)
1,2,3,4, bilingual services

Canadian Down Syndrome Society
811 14th St. NW
Calgary, AB CAN T2N 2A4
(403) 270-8500
(403) 270-8291 (fax)
www.home./ican.net/cdss/index.html
??cdss@ican.net
1,2,4,5,6, 7; French materials

Foundation for Children with
Down Syndrome
17646 N. Cave Creek Rd., Ste. 152
Phoenix, AZ 85032
(602) 493-7688
(602) 265-8216 (fax)
www.ffcwds.org

Foundation for Children with
Down Syndrome (NJ office)
355 Bennetts Mills Rd.
Jackson, NJ 08527
(732) 833-1331

National Down Syndrome Congress
1605 Chantilly Dr., Ste. 250
Atlanta, GA 30324
(800) 232-6372
(404) 633-1555
(404) 633-2817 (fax)
www.carol.net/~ndsc/
??ndsscenter@aol.com
1,2,3,4,6,7

National Down Syndrome
Society
666 Broadway, 8th Fl.
New York, NY 10012-2317
(800) 221-4602
(212) 460-9330
(212) 979-2873 (fax)
www.ndss.org
??info@ndss.org
1,2,4,5,6,7,8; Spanish materials

International Foundation for
Genetic Research
500A Garden City Dr.
Pittsburgh, PA 15146
(412) 823-6380
(412) 373-7713 (fax)
www.pennet.com/chuckdet/
index.html
??tmf@pennet.com
1,2,4,7,8

DUAL SENSORY IMPAIRMENTS

See: Deaf-Blind

DUBOWITZ SYNDROME

See also: Craniofacial Disorders;
Growth Disorders

Dubowitz Syndrome Parent
Support Network
PO Box 2441
Vincennes, IN 47591
(812) 886-0575
(812) 886-1128 (fax)
??INATTIC1@aol.com

DUCHENNE MUSCULAR
DYSTROPHY

See: Muscular Dystrophy

DWARFISM

See also: Dwarfism, Metatrophic;
Growth Disorders; Short Stature

Billy Barty Foundation
3393 Geneva Dr.
Santa Clara, CA 95051
(408) 244-6354
(408) 296-6317
??figone@netgate.net
1,2,3,4,5,6,7; emergency
financial assistance, scholarships

DYGENESIS OF THE
CORPUS CALLOSUM

See: Agenesis of the Corpus Callosum

DYSAUTONOMIA, FAMILIAL

See: Familial Dysautonomia

DYSKERATOSIS, CONGENITAL

See: Ectodermal Dysplasias

DYSLEXIA

See also: Attention Deficit Disorder;
Learning Disabilities

Dyslexia Research Institute
4745 Centerville Rd.
Tallahassee, FL 32308
(850) 893-2216
(850) 893-2440 (fax)
www.dyslexia-add.org
??pathard@aol.com
1,2,4,7; teacher training, workshops

The Orton Dyslexia Society
8600 La Salle Rd.
Chester Bldg., Ste. 382
Baltimore, MD 21286-2044
(800) 222-3123
(410) 296-0232
(410) 321-5069 (fax)
www.pie.org/ods
??info@interdys.org
1,2,3,4,5,6,7,8,9; Spanish materials

Recording for the Blind
& Dyslexic
20 Roszel Rd.
Princeton, NJ 08540
(609) 452-0606
(609) 520-7990 (fax)
2; extensive lending library of
academic textbooks on
audiocassette (all levels)

DYSOSTOSIS, ACROFACIAL,
NAGER TYPE

See: Nager & Miller Syndromes

DYSOSTOSIS, MANDIBULOFACIAL

See: Nager & Miller Syndromes;
Treacher Collins Syndrome

DYSOSTOSIS, METAPHYSEAL,
TYPE B IV

See: Shwachman Syndrome

DYSOSTOSIS, POSTAXIAL
ACROFACIAL

See: Nager & Miller Syndromes

DYSPLASTIC ANGIECTASIA,
CONGENITAL

See: Klippel-Trenaunay Syndrome

DYSTONIA

Dystonia Medical
Research Foundation
One E Wacker Dr., Ste. 2430
Chicago, IL 60601-1905
(312) 755-0198
(312) 803-0138 (fax)
www.dystonia-foundation.org/
??dystonia@dystonia-foundation.org/
1,2,3,4,5,6,7,8,9

Dystonia Medical Research
Foundation--Canada
116-230 Heath St. W.
Toronto, ON CAN M5P 1N8
(800) 361-8061 (Canada only)
(416) 487-8326
??dysffdtn@aol.com
1,2,3,4,5,7,8,9

DYSTROPHIC EPIDERMOLYSIS
BULLOSA

See: Epidermolysis Bullosa, Dystrophic

EATON-LAMBERT SYNDROME

See: Muscular Dystrophy

ECTODERMAL DYSPLASIAS

Canadian Society for
Ectodermal Dysplasia
(Eastern Canada)
232 Macintosh Dr.
Stoney Creek, ON CAN L8E 4C2
2,3,4,9

Canadian Society for
Ectodermal Dysplasia
(Western Canada)
304 Hawkwood Blvd., NW
Calgary, AB CAN T3G 2Y5
(416) 664-6121
2,3,4

ECTRODACTYLY-ECTODERMAL
DYSPLASIA-CLEFT LIP/PALATE
(EEC) SYNDROME

See: Cleft Palate; Craniofacial
Disorders; Ectodermal Dysplasias

EEC SYNDROME

See: Cleft Palate; Craniofacial
Disorders; Ectodermal Dysplasias

EHLERS-DANLOS SYNDROME

See also: Connective Tissue
Disorders; Glaucoma;
Visual Impairments

Ehlers-Danlos National Foundation
6399 Wilshire Blvd. #510
Los Angeles, CA 90048
(213) 651-3038
(213) 651-1366 (fax)
www.phoenix.net/~leigh/eds
??LooseJoint@aol.com
1,2,3,4,5,6,8,9

EINSTEIN SYNDROME

See: Hearing Impairments; Kidney
Diseases, Heredffary; Vision Impairments

ELASTORRHEXIS

See: Connective Tissue Disorders

ELASTOSIS DYSTROPHICA
SYNDROME

See: Pseudoxanthoma Elasticum (PXE)

ELEPHANTITIS

See: Lymphedema

ELLIS-VAN CREVELD SYNDROME

See: Ectodermal Dysplasias

EMERY-DREIFUSS
MUSCULAR DYSTROPHY

See: Muscular Dystrophy

EMG SYNDROME

See: Beckwith-Wiedemann Syndrome

ENCEPHALITIS, CHRONIC
LOCALIZED

See: Rasmussen Syndrome

ENCEPHALITIS &
EPILEPSY, CHRONIC

See: Rasmussen Syndrome

ENCEPHALITIS, RASMUSSEN

See: Rasmussen Syndrome

ENCEPHALOFACIAL
ANGIOMATOSIS

See: Sturge-Weber Syndrome

ENCEPHALOMYELOPATHY

See: Leigh Disease

ENCEPHALOMYELORADICUL-OPATHY,
ACUTE ISSEMINATED

See: Guillain-Barre Syndrome

ENCEPHALOTRIGEMINAL
ANGIOMATOSIS

See: Sturge-Weber Syndrome

ENCHONDROMATOSIS

See: Ollier Disease

ENDOCARDIAL FIBROSLASTOSIS

See: Heart Disorders

ENTEROPATHY, GLUTEN-SENSITIVE

See: Celiac Disease; Celiac Sprue;
Gluten Intolerance

EOSINOPHILIC GRANULOMA

See: Histiocytosis

EPICANTHUS INVERSUS

See: Blepharophimosis, Ptosis,
Epicanthus Inversus Syndrome (BPES)

EPIDERMOLYSIS BULLOSA,
DYSTROPHIC

See also: Connective Tissue Disorders

DEBRA: Dystrophic
Epidermolysis Bullosa
Research Association
40 Rector St.
New York, NY 10006
(212) 513-4090
(212) 513-4099
www.debra.org
1,2,3,4,5,6,7,8,9; Spanish materials

EPIDERMOLYTIC HYPERKERATOSIS

See: Ichthyosis

EPILEPSY

See also: Seizure Disorders

American Epilepsy Society
638 Prospect Ave.
Hartford, CT 06105-4240
(860) 586-7505
(860) 586-7550 (fax)
www.aesnet.org
??info@aesnet.org
1,2,6

Epilepsy Canada
1470 Peel St., Ste. 745
Montreal, PQ CAN H3A 1T1
(514) 845-7855
(514) 845-7866 (fax)
generation.net/~epilepsy
??epilepsy@epilepsy.ca
1,2,4,5,7,8; French materials

Epilepsy Foundation of America
4351 Garden City Dr.
Landover, MD 20785-2267
(800) 332-4050
(301) 459-3700
(301) 577-2684 (fax)
www.efa.org
??postmaster@efa.org
1,2,4,5,6,7; Spanish materials

EPILOIA

See: Tuberous Sclerosis

ERB PALSY

Brachial Plexus/Erb's Palsy
Support and Informational
Network, Inc.
PO Box 23
Larsen, WI 54947
(920) 836-9955
(920) 836-9587
www.customforum.com/nationalbpi
??nationalbpi@powernetonline.com
1,2,3,4,5,6

ERB/DUCHENNE PALSY

See: Erb Palsy

ERDHEIM-CHESTER DISEASE

See: Histiocytosis

ERYTHROBLASTOPHTHISIS

See: Anemia, Aplastic

ERYTHROBLASTOTIC ANEMIA
OF CHILDHOOD

See: Cooley Anemia

ERYTHROHEPATIC
PROTOPORPHYRIA

See: Liver Disorders; Porphyria

ERYTHROKERATODERMIAS

See: Ichthyosis

ERYTHROPHAGOCYTIC
LYMPHOHISTIOCYTOSIS,
FAMILIAL

See: Histiocytosis

ESOPHAGEAL ATRESIA

See: VATERL Association

EVANS SYNDROME

See also: Autoimmune
Disorders; Neutropenia

Evans Syndrome Support
and Research Group
c/o Lou Addington
5630 Devon St.
Port Orange, FL 32127
(904) 760-3031
(904) 760-5583 (fax)
73142.1315@compuserve.com
3,4,9

EXOMPHALOS-MACROGLOSSIA-GIGANTISM
(EMG) SYNDROME

See: Beckwith-Wiedemann Syndrome

EXTRACORPOREAL
MEMBRANE OXYGENATION

ECMO Moms and Dads
International Parent Support
PO Box 53848
Lubbock, TX 79453
(806) 794-0259
(806) 792-1289 (fax)
1,2,3,4,5,9

FABRY DISEASE

See also: Tay-Sachs Disease

International Center for
Fabry Disease
Dept of Human Genetics
Mt Sinai School of Medicine
5th Ave. at 100th St.
PO Box 1497
New York, NY 10029
(212) 241-6944
(212) 348-5811 (fax)
www.mssm.edu/crc/fabry
1,2,3,7,9

FACIAL DISFIGUREMENT

See: Craniofacial Disorders

FACIAL PARALYSIS

See: Bell Palsy

FACIO-AURICULO-VERTEBRAL
ANOMALY

See: Goldenhar Syndrome

FACIO-CARDIO-CUTANEOUS SYNDROME

See: Cardio-Facio-Cutaneous Syndrome

FACIO-SCAPULO-HUMERAL
MUSCULAR DYSTROPHY

Muscular Dystrophy
Facio-Scapulo-Humeral Society
3 Westwood Rd.
Lexington, MA 02420
(617) 860-0501
(617) 860-0599 (fax)
www.disability.ucdavis.edu
??carol.perez@fishsociety
1,2,3,4,6,7,9

FAMILIAL ATAXIA

See: Ataxia; Friedreich Ataxia

FAMILIAL DYSAUTONOMIA

Dysautonomia Foundation
20 E. 46th St., 3rd Fl.
New York, NY 10017
(212) 949-6644
(212) 682-7625 (fax)
1,2,3,9

Dysautonomia Foundation
343 Clarke Ave. W., Ste. 1103
Thornhill. ON CAN L4J 7K5
(905) 882-7725
(905) 764-7752 (fax)
1,2,3,4,5,6,8,9

FAMILIAL PEMPHIGUS

See: Ichthyosis

FAMILIAL SPLENIC ANEMIA

See: Gaucher Disease

FANCONI ANEMIA

See: Anemia, Fanconi

FANCONI II

See: Cystinosis

FANCONI PANMYELOPATHY

See: Anemia, Fanconi

FARBER DISEASE

See: Tay-Sachs Disease

FAS/FAE

See: Fetal Alcohol Syndrome/Effect

FATTY OXIDATION DISORDER

See also: Metabolic Disorders

Support Group for FOD Families
805 Montrose Dr.
Greensboro, NC 27410
(336) 547-8682
(336) 547-0196 (fax)
www.cinternet.net/FOD
??goulddan@aol.com
1,3,4,7

FEMALE SEX
CHROMOSOME DISORDERS

See: Turner Syndrome

FETAL ALCOHOL
SYNDROME/EFFECT

Family Empowerment Network:
Supporting Families Affected
by FAS/FAE
519 Lowell Hall
610 Langdon St.
Madison, WI 53703
(800) 462-5254
(608) 262-6590
(608) 265-3352 (fax)
??fen@mail.dcs.wisc.edu
1,2,3, 4,6, 7; Spanish materials

Fetal Alcohol Education Program
1975 Main St.
Concord, MA 01742
(508) 369-7713
2,3,4,9

Fetal Alcohol Support Network
2266 Homeland Dr.
Mississauga, ON CAN L5K 1G6
(905) 822-0733 (voice/fax)
1,2,3,4,9

The Fetal Alcohol Syndrome
Family Resource Institute
PO Box 2525
Lynnwood, WA 98036
(800) 999-3429 (WA only)
(253) 531-2878
(253) 531-2668 (fax)
www.accessone.com/~delindam/
??vicfas@hotmail.com
1,2,3,4,9

National Organization on Fetal
Alcohol Syndrome
418 C St. NE
Washington, DC 20002
(202) 785-4585
(202) 466-6456 (fax)
www.nofas.org
??nofas@erols.com
1,2,4

Support and Education Network
for FAS Parents and Caregivers
c/o Bergen County Council on
Alcoholism & Drug Abuse, Inc.
PO Box 626
Paramus, NJ 07653
(201) 261-2183
(201) 261-0807 (fax)
??jpmulhern@aol.com
2,3,4

FETAL FACE SYNDROME

See: Robinow Syndrome

FETAL IRITIS SYNDROME

See: Norrie Disease

FIBROMYALGIA

See: Arthritis

FIBROUS ANKYLOSIS OF
MULTIPLE JOINTS

See: Arthrogryposis Multiplex Congenita

FIBROUS DYSPLASIA,
MONOSTOTIC

See: McCune-Albright Syndrome

FIBROUS DYSPLASIA,
POLYOSTOTIC

See: McCune-Albright Syndrome

FIBULAR HEMIMELIA

See: Limb Disorders

FIRST AND SECOND
BRANCHIAL ARCH SYNDROME

See: Goldenhar Syndrome

FISCHER SYNDROME

See: Guillain-Barre Syndrome

FISCHER-JACOBSEN-CLOUSTON
SYNDROME

See: Ectodermal Dysplasias

FOCAL DERMAL HYPOPLASIA
(FDH) SYNDROME

See: Craniofacial Disorders;
Ectodermal Dysplasias;
Hearing Impairments

FOLATE METABOLISM;
INBORN ERROR OF

See: Cobalamin (B12) Defiency

FOOD ALLERGY

See also: Asthma & Allergy

The Food Allergy Network
10400 Eaton PI., Ste. 107
Fairfax, VA 22030-2208
(703) 691-3179
(703) 691-2713 (fax)
www.foodallergy.org
??fan@worldweb.net
1,2,4,6,7,9

FORBES DISEASE

See: Glycogen Storage Diseases;
Muscular Dystrophy

FRAGILE X SYNDROME

See also: Attention Deficit Disorder;
Autism; Learning Disabilities

FraXa Research Foundation
PO Box 935
West Newbury, MA 01985-0935
(978) 462-1990
(978) 463-9985 (fax)
www.qorx.net/fraxa
??info@fraxa.org
1,2,3,5,7,8,9; Internet mailing list

National Fragile X Foundation
1441 York St., Ste. 303
Denver, CO 80206
(800) 688-8765
(303) 333-6155
(303) 333-4369 (fax)
www.infxf.org
??natfragx@ix.netcom.com
1,2,3,4,5,6,7,8,9

FRANCHESCHETTI-KLEIN
SYNDROME

See: Treacher Collins Syndrome

FRAXA

See: Fragile X Syndrome

FREDREICH DISEASE

See: Ataxia; Friedreich Ataxia

FREDREICH TABES

See: Ataxia; Friedreich Ataxia

FREEMAN-SHELDON SYNDROME

See also: Craniofacial Disorders

Freeman-Sheldon Parent
Support Group
509 E. Northmont Wy.
Salt Lake City, UT 84103
(801) 364-7060
www.fspsg.org
??fspsg@aol.com
1,2,3,4,7,9

FRIEDREICH ATAXIA

See also: Ataxia; Muscular Dystrophy

Canadian Association of
Friedreich's Ataxia
5620 C A Jobin Rd.
St. Leonard. PQ CAN H1P 1H8
514) 321-8684
(514) 321-9257 (fax)
1,2,8,9; French materials

FUCOSIDOSIS

See: Tay-Sachs Disease

FULLER-ALBRIGHT SYNDROME
See: McCune-Albright Syndrome

FULMINATING HYPERPYREXIA

See: Malignant Hyperthermia

G SYNDROME

See: Opitz Syndrome

GALACTOSE-1-PHOSPHATE
URIDYL TRANSFERASE
DEFICIENCY

See: Galactosemia

GALACTOSEMIA

See also: Metabolic Disorders,
Liver Disease

Parents of Galactosemic
Children Inc.
2148 Bryton Dr.
Powell, OH 95252
(614) 840-0473
www.galactosemia.org
??gayled3@aol.com
1,2,3,6,9

GARDNER SYNDROME

See: Peutz-Jeghers Syndrome; Polyposis

GASTROESOPHAGEAL REFLUX

See also: Intestinal Pseudo-Obstruction
Syndrome

Pediatric/Adolescent
Gastroesophageal Reflux
Association Inc. (PAGER)
PO Box 1153
Germantown, MD 20875-1153
(301) 601-9541
??gergroup@aol.com
1,2,3,5,6,9

GASTROINTESTINAL CANCER
See: Peulz-Jeghers Syndrome; Polyposis

GASTROINTESTINAL DISORDERS

The Oley Foundation
214 Hun Memorial
Albany Medical Center, A-23
Albany, NY 12208-3478
(800) 776-0LEY (6539)
(518) 262-5079
(518) 262-5528 (fax)
www.wizvax.net/oleyfdn
??joan_bishop@ccgateway.amc.edu
Information and support on home
nutrition support including
enteral and parental nutrition.

GAUCHER DISEASE

See also: Tay-Sachs Disease

National Gaucher Foundation
11140 Rockville Pike, Ste. 350
Rockville, MD 20852-3106
(800) 925-8885
(301) 816-1515
(301) 816-1516 (fax)
www.gaucherdisease.org
??ngf@gaucherdisease.org
1,2,3,4,5,6,7,8,9

GEDE-WIEDEMANN SYNDROME

See: Nager & Miller Syndromes

GENETIC DISORDERS

Alliance of Genetic Support Groups
4301 Connecticut Ave. NW, Ste. 404
Washington, DC 20008
(202)966-5557
(202) 966-8553 (fax)
www.geneticalliance.org
??info@geneticalliance.org

Association of Genetic
Support/Australia
66 Albion St.
Surrey Hills, Australia NSW 2010
(02) 9211 1462
(02) 9211 8077 (fax)
1,2,3,4,6,9

Northeast VCFS Support Group
2 Lansing Dr.
Salem, NH 03079
(603) 898-6332
(603) 898-0705
??MLADJA@aol.com
1,2,3,6,9

GENITALIA, AMBIGUOUS

See also: Hermaphroditism

Ambiguous Genitalia Support
Network (AGSN)
PO Box 313
Clements, CA 95227-0313
(209) 727-0313 (voice/fax)
??agsn@jps.net
1,2,3,4,5,7,9

GILFORD SYNDROME

See: Progeria

GINGIVAL FIBROMATOSIS
AND HYPERTRICHOSIS

See: Ectodermal Dysplasias

GIROUX-BARBEAU SYNDROME

See: Ichthyosis

GLAUCOMA

See also: Visual Impairments

Glaucoma Research Foundation
490 Post St., Ste. 830
San Francisco, CA 94102
(800) 826-6693
(415) 986-3162
www.glaucoma.org
??info@glaucoma.org
1,2,3,4,8; Spanish materials

GLUCOSYL CEREBROSIDE
LIPIDOSIS

See: Gaucher Disease

GLUTARIC ACIDURIA, TYPE I

See also: Acidemia, Organic;
Lactic Acidosis

International Organization for
Glutaric Aciduria, Type I
c/o Mike Metil and Cay Welch
RD 3, Box 167A
Jersey Shore, PA 17740
(717) 321-6487
1,2,3,4,6,8

GLUTARICACIDURIA I

See: Glutaric Aciduria, Type I

GLUTARICACIDURIA II

See: Acidemia, Organic;
Lactic Acidosis

GLUTEN INTOLERANCE

See also: Celiac Disease;
Celiac Sprue

Gluten Intolerance Group of
North America
PO Box 23053
Seattle, WA 98102-0353
(206) 325-6980
(206) 320-1172 (fax)
??gig@accessone.com
1,2,3,4,6,7; Spanish materials

GLUTEN-SENSITIVE ENTEROPATHY

See: Celiac Disease; Celiac Sprue;
Gluten Intolerance

GLYCOGEN STORAGE DISEASES

See also: Hypoglycemia

Association for Glycogen
Storage Disease
PO Box 896
Durant, IA 52747
(319) 785-6038 (voice/fax)
1,2,3,6,8,9

GLYCOGENOSES

See: Glycogen Storage Diseases

GLYCOSPHINGOLIPIDOSES

See: Tay-Sachs Disease

GOLDENHAR SYNDROME

See also: Craniofacial Disorders

Goldenhar Syndrome Research
& Information Fund
PO Box 61643
St. Petersburg, FL 33714
(813) 522-5772
(813) 522-5885 (fax)
www.GOLDENHAR.com
??btorman@pbsnet.com
2

GOLDENHAR-GORLIN SYNDROME

See: Goldenhar Syndrome

GOLDFLAM DISEASE

See: Myasthenia Gravis

GONADAL DYGENESIS (45, X)

See: Turner Syndrome

GORLIN-CHAUDHRY-MOSS
SYNDROME

See: Ectodermal Dysplasias

GRANULOMA, EOSINOPHILIC

See: Histiocytosis

GRANULOMATOUS DISEASE,
CHRONIC

See also: Immune Disorders

Chronic Granulomatous Disease
Association Inc.
c/o Mary Hurley
2616 Monterey Rd.
San Marino, CA 91108
(626) 441-4118
www.pacific.net.net/amhurley
??amhurlley@pacific.net
1,2,3,4,7,9

GRAVES DISEASE

See: Thyroid Disorders

GROENBLAD-STRANDBERG
SYNDROME

See: Pseudoxanthoma Elasticum (PXE)

GROUP B STREP

Group B Strep Association
PO Box 16515
Chapel Hill, NC 27516
(919) 932-5344
(919) 932-3657 (fax)
www.groupbstrep.org
1,2,3,4,7,8,9

GROWTH DISORDERS

See also: Dwarfism; Short Stature

Human Growth Foundation
7777 Leesburg Pike, Ste. 202 S
Falls Church, VA 22043
(800) 451-6434
(703) 883-1773
(703) 883-1776 (fax)
www.genetic.org/hgf
??hgfound@erols.com
1,2,3, 4,5,6,8,9; Spanish materials

Little People's Research Fund
80 Sister Pierre Dr.
Towson, MD 21204
(800) 232-5773
(410) 494-0055
(410) 494-0062 (fax)
1,2,8

MAGIC Foundation for
Children's Growth
1327 N. Harlem Ave.
Oak Park, IL 60302
(800) 362-4423
(708) 383-0808 (fax)
(708) 383-0899
www.magicfoundation.org
??mary@magicfoundation.org
1,2,3,4,5,6,9; Spanish materials,
pen pal program for children

GROWTH HORMONE DEFICIENCY

See: Growth Disorders

GROWTH RETARDATION,
INTRAUTERINE

See: Growth Disorders

GROWTH RETARDATION-ALOPECIA-PSEUDOANODONTIA-OPTIC ATROPHY

See: Ectodermal Dysplasias

GUERIN-STERN SYNDROME

See: Arlhrogryposis Multiplex Congenita

GUILLAIN-BARRE SYNDROME

See also: Autoimmune Disorders

Guillain-Barre Syndrome
Foundation International
PO Box 262
Wynewood, PA 19096
(610) 667-0131
(610) 667-7036
www.webmast.com/gbs/
??GBINT@ix.netcom.com

Guillain-Barre Syndrome
Support Group of Ontario
2345 Yonge St., Ste. 901
Toronto, ON CAN M4P 2E5
(800) 567-2873
(519) 747-5777
(519) 747-5987 (fax)
??info@brenfile.com
1,5,6,8,9

GUNTHER PORPHYRIA

See: Porphyria

GUY-PATIN SYNDROME

See: Fibrodysplasis Ossificans Progressiva

HADDAD SYNDROME

See: Central Hypoventilation
Syndrome, Congenital

HAILEY-HAILEY DISEASE

See: Ichthyosis

HAIRY ELBOWS DYSPLASIA

See: Ectodermal Dysplasias

HALLERMAN-STREIFF SYNDROME

See: Craniofacial Disorders;
Ectodermal Dysplasias; Short Stature

HALLOPEAU-SIEMENS DISEASE

See: Epidermolysis Bullosa, Dystrophic

HAND-SCHULLER-CHRISTIAN
SYNDROME

See: Histiocytosis

HAND-SHOULDER SYNDROME

See: ReflexSympathetic
Dystrophy Syndrome

HARLEQUIN ICHTHYOSIS

See: Ichthyosis

HAY-WELLS SYNDROME

See: Cleft Palate; Craniofacial
Disorders; Deaf-Blind; Ectodermal
Dysplasias; Hearing Impairments;
Visual Impairments

HAYDEN SYNDROME

See: Ectodermal Dysplasias

HEAD INJURY

See: Brain Injury

HEARING IMPAIRMENT/
VISUAL IMPAIRMENT

See: Deaf-Blind

HEARING IMPAIRMENTS

Alexander Graham Bell
Association for the Deaf
3417 Volta Pl. NW
Washington, DC 20007-2778
(202) 337-5220 (voice/TTY)
(202) 337-8314 (fax)
www.agbell.org
??agbell2@aol.com
1,2,3,4,5,6,7; Spanish materials,
scholarship program

American Society for
Deaf Children
1820 Tribute Rd., Ste. A
Sacramento, CA 95815
(800) 942-2732 (voice/TTY)
(916) 641-6084
(916) 641-6085 (fax)
www.deafchildren.org
??asdc1@aol.com
1,2,3,4,5,6,7

American Speech, Language,
Hearing Association
10801 Rockville Pike
Rockville, MD 20852
(301) 897-5700

Auditory-Verbal International
2121 Eisenhower, Ste. 402
Alexandria, VA 22314
(703) 739-1049
(703) 739-0874 (TTY)
(703) 739-0395 (fax)
www.digitalnation.com/avi
??avi@csgi.com
1,2,3,4,6,7

Better Hearing Institute--U.S.
and Canada

5021 Blacklick Rd.
Annandale, VA 22003
(800) 327-9355 (voice/TTY)
(703) 642-0580
(703) 750-9302 (fax)
1,2,4

The Canadian Hearing Society
271 Spadina Rd.
Toronto, ON CAN M5R 2V3
(416) 964-9595
(416) 964-0023 (TTY)
(416) 928-2525 (fax)
www.chs.ca
??info@chs.ca
1,2, 4,5,6, 7; French/Italian/
Portuguese/Chinese materials

Cochlear Implant Club
International
5335 Wisconsin Ave. NW
Washington, DC 20015
(202) 895-2781
(202) 895-2782 (fax)
??76207.3114@compuserve.com
1,2,3,4,5,6,7

Deafness Research Foundation
15 W. 39th St.
New York, NY 10018
(212) 768-1181
(800) 535-3323
(212) 768-1782 (fax)
www.drf.org
??drf@DRE.org
1,2,4,7,8

HEAR Now
9745 E. Hampden Ave., Ste. 300
Denver, CO 80231-4923
(800) 648-4327 (voice/TTY)
(303) 695-7797 (voice/TTY)
(303) 695-7789 (fax)
www.leisurelan.com~hearnow/
??jostetter@aol.com
1,2,7; accepts tax-deductible
donations of used hearing aids

John Tracy Clinic for Preschool
Deaf Children
806 W. Adams Blvd.
Los Angeles, CA 90007
(800) 522-4582 (voice/TTY)
(213) 748-5481
(213) 747-2924 (TTY)
(213) 749-1651 (fax)
www.jogntracyclinic.org
??jtclinic@aol.com
2,3, 4; free correspondence
course for preschoolers,
Spanish materials

Lead Line
House Ear Institute
2100 W. Third St., 5th Fir.
Los Angeles, CA 90057
(800) 352-8888 (voice/TTY)
(800) 287-4763 (voice/TTY,
CA only)
(213) 483-8789 (fax)
www.hei.org
??blincoln@hei.org
2,3,4

The Learning to Listen Foundation
Phillips House
North York General Hospital
10 Buchan Ct.
Toronto, ON CAN M2J IV2
(416) 491-4648
1,2,3,4,7

National Association of the Deaf
814 Thayer Ave.
Silver Spring. MD 20910-4500
(301) 587-1788
(301) 587-1789 (TTY)
(301) 587-1791 (fax)
www.nad.com
??NADHQ@juno.com
1,2,4,5,6,7; youth program i

(SEE) Center for the
Advancement of Deaf Children
PO Box 1181
Los Alamitos, CA 90720
(562) 430-1467 (voice/TTY)
(562) 795-6614 (fax)
2,4

SHHH: Self Help for Hard of
Hearing People
7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
(301) 657-2248
(301) 657-2249 (TTY)
(301) 913-9413 (fax)
ourworld.compuserve.com/homepages/shhh
??71162.634@compuserve.com
1,2,4,5,8,7

Telecommunications for
the Deaf, Inc.
8630 Fenton St., Ste. 604
Silver Spring, MD 20910-3803
(301) 589-3786
(301) 589-3006 (TTY)
(301) 589-3797 (fax)
1,2,4,8,7

HEARING IMPAIRMENTS

See also: Learning Disabilities,

National Cued Speech
Association (NCSA)
4245 East Ave.
Rochester, NY 14618
(800) 459-3529
(716) 586-2456 (fax)
www.cuedspeech.org
??cuedspdisc@aol.com
1,2,3,4,5,6,7

HEART DISORDERS

American Heart Association
7272 Greenville Ave
Dallas, TX 75231-4596
(800) 242-8721
(214) 706-1176
(214) 706-2139 (fax)
www.amhrt.org/
??inquire@amhrt.org
2,3,4,5,6, 7,8,9; Spanish materials

CHASER: Congenital Heart
Anomalies--Support, Education,
& Resources, Inc.
2112 N. Wilkins Rd.
Swanton, OH 43558
(419) 825-5575
(419) 825-2880 (fax)
www.csun.edu/~hfmth006/chaser
/chaser-news/html
??chaser@compuserve.com
??myer106w@cclc.gov
1,2,3,4,7,9

Children's Heart Association for
Support and Education
c/o Cardiac Clinic
Hosp for Sick Children
555 University Ave.
Toronto, ON CAN M5G 1X8
(416) 813-5848
(416) 813-5582
1,2,3,4,8,9

HEMIDYSPLASIA, UNILATERAL

See: Ichthyosis

HEMIFACIAL MICROSOMIA

See: Goldenhar Syndrome

HEMIHYPERTROPHY

See: Beckwith-Wiedeman Syndrome

HEMIPLEGIA, ALTERNATING

See also: Epilepsy; Seizure Disorders

International Foundation for
Alternating Hemiplegia
of Childhood
239 Nevada St.
Redwood City, CA 06460
(650) 365-5798
??laegan@aol.com
1,2,3,8,9

HEMISPERECTOMY

See: Rasmussen Syndrome

HEMOLYTIC ANEMIA

See: Cooley Anemia

HEMOLYTIC-UREMIC SYNDROME

See: Kidney Disorders

HEMOPHAGOCYTIC
LYMPHOHISTIOCYTOSIS

See: Histiocytosis

HEMOPHAGOCYTIC RETICULOSIS

See: Histiocytosis

HEMOPHILIA

National Hemophilia Foundation
116 W. 32nd St., 11th Fl.
New York, NY 10001-3212
(800) 424-2634
(212) 328-3700
(212) 328-3777 (fax)
www.hemophilia.org
??info@hemophilia.org
1,2,3,4,5,6,7,8; Spanish materials

World Federation of Hemophilia
1310 Green Ave., Ste. 500
Montreal, PQ CAN H3Z 2B2
(514) 933-7944
(514) 933-8916 (fax)
www.wfh.org
??wsh@wfh.org
1,2,4,8,8; worldwide referrals,
guide for travelers

HEMORRHAGIC NODULAR
PURPURA

See: Fabry Disease

HEPATIC DUCTULAR
HYPOPLASIA, SYNDROMATIC

See: Alagille Syndrome

HEPATOLENTICULAR
DEGENERATION

See: Wilson Disease

HEPATOPHOSPHORYLASE
DEFICIENCY GLYCOGENOSIS

See: Glycogen Storage Diseases;
Muscular Dystrophy

HEREDITARY KIDNEY DISEASES

See: Kidney Diseases, Hereditary

HEREDITARY LEPTOCYTOSIS

See: Cooley Anemia

HERMANSKY-PUDLAK
SYNDROME

See also: Albinism &
Hypopigmentation; Visual Impairments

Hermansky-Pudlak Syndrome
Network Inc.
1 South Rd.
Oyster Bay, NY 11771
(800) 789-9477
(516) 922-3440
(516) 922-4022 (fax)
www.medhelp.org/web/hspn.htm
??hpsnw@juno.com
1,2,3,6,8,9

HERMAPHRODITISM

See also: Genitalia, Ambiguous

Intersex Society of North America
PO Box 31791
San Francisco, CA 94131
(415) 575-3885
(415) 252-8202
www.isna.org
??info@isna.org
1,2,3,5,7

HERNIA, DIAPHRAGMATIC

CHERUBS
PO Box 1150
Creedmoor, NC 27522
(919) 693-8158
www.gloryroad.net/~cherubs
??Cherubs@gloryroad
1,2,3,4,7,9

HERS DISEASE

See: Glycogen Storage Diseases;
Muscular Dystrophy

HIRSCHSPRUNG DISEASE

See: Intestinal Pseudo-Obstruction
Syndrome

HISTIOCYTOSIS

See also: Growth Disorders; Liver
Disorders; Lung Disorders;
Pituitary Disorders

Histiocytosis Association
of America
302 N. Broadway
Pitman, NJ 08071
(800) 548-2758 (US and Canada)
(609) 589-6606
(609) 589-6614 (fax)
www.histio.org
??hisiocyte@aol.com
1,2,3, 4,8; Spanish materials

Histiocytosis Association
of Canada
2316 Glastonbury Rd.
Burlington, ON CAN L7P 3Y3
(905) 335-2172
??aprile.duda@sympatico.ca
1,2,3,4,6,8

HIV

See: AIDS

HODGKIN DISEASE

See: Leukemia

HOLOPROSENCEPHALY

See also: Brain Ma/formations;
Chromosomal Abnormalities;
Craniofacial Disorders

The Carter Centers for Brain
Research in Holoprosencephaly
and Related Malformations
Texas Scottish Rite Hospital for
Children, Dept. of Neurology
2222 Welborn St.
Dallas, TX 75219
(800) 421-1121
(214) 559-8411
(214) 559-7835 (fax)
??nclegg@tsrh.org
??hpe@tsrh.org
1,2,3,4,8,9

HOSPITALITY HOUSING

Children's Hospital International
2202 Mt. Vernon Ave., Ste. 3C
Alexandria, VA 22301
(800) 2-4-CHILD (242-4453)
(703) 684-0330
(703) 684-0226 (fax)
www.chionline.org
??chiorg@aol.com

National Association of Hospital
Hospitality Houses
4915 Auburn Ave., Ste. 303
Bethesda, MD 20814
(800) 542-9730
(301) 961-5264
(301)961-3094
www.visitusa.com/hhh
??nahhhcom@aol.com

HUMAN IMMUNODEFICIENCY
VIRUS

See: AIDS

HUNTER SYNDROME

See: Mucopolysaccharidosis; Tay-Sachs
Disease

HURLER SYNDROME

See: Mucopolysaccharidosis; Tay-Sachs
Disease

HURLER/SCHEIE SYNDROME

See: Mucopolysaccharidosis; Tay-Sachs
Disease

HUTCHINSON-GILFORD
SYNDROME

See: Progeria

HUTCHINSON-WEBER-PEUTZ
SYNDROME

See: Peutz-Jeghers Syndrome; Polyposis

HYDROCEPHALUS

Guardians of Hydrocephalus
Research Foundation
2618 Ave. Z
Brooklyn, NY 11235
(800) 458-8655
(718) 743-4473
(718) 743-1171 (fax)
1,2,3; Spanish materials

Hydrocephalus Association
870 Market St., Ste. 955
San Francisco, CA 94102
(415) 732-7040 (voice/fax)
www.heurosurgery.mgh.harvard.
edu/ha/
??hydroassoc@aol.com
1,2,3,6, 7,8,9; Spanish materials

Hydrocephalus Support Group, Inc.
PO Box 4236
Chesterfield, MO 63006-4236
(314) 532-8228
(314) 995-4108 (fax)
??hydro@inlink.com
1,2,3,4,6,7,9

National Hydrocephalus
12413 Centralia Rd.
Lakewood, CA 90715-1623
(562) 402-3523
(562) 924-6666 (fax)
www.geocities.com/HOTSPRINGS/
villa/2300
??hydrobrat@earthlink.net
1,2,3,4,5,6,7,8,9; Have videos
and cassettes available

HYDROCEPHALUS, OBSTRUCTIVE

See: Dandy-Walker Syndrome

HYPERAMMONEMIA

See: Urea Cycle Disorders

HYPERCALCEMIA SYNDROME,
INFANTILE, IDIOPATHIC

See: Williams Syndrome

HYPERGLYCINEMIA-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)
www.ican-net/~cha
??cha@ican.net
1,2,3,4,5,6,9

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; Myelin, Insufficient

HYPOPARATHYROIDISM

See also: Thyroid Disorders

Hypoparathyroidism Newsletter
2835 Salmon St.
Idaho Fall, ID 83406
(208) 524-3857
??hpth@june.com
1,3

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-KERATITS

See: Ectodermal Dysplasias

ICHTHYOSIS

FIRST: Foundation for Ichthyosis
and Related Skin Types
PO Box 669
Ardmore, PA 19003
(800) 545-3286
(610) 789-3995
(610) 789-4366 (fax)
??ichthyosis@aol.com
1,2,3,4,6,7,9; Spanish materials

IDIOPATHIC THROMBOCYTOPENIA
PURPURA (ITP)

See: Purpura, Idiopathic
Thrombocytopenia (ITP)

IDIOSYNCRATIC PORPHYRIA

See: Porphyria

ILLIOSTOMY

See: Ostomy

ILLNESS, TERMINAL

See also: Bereavement Support

Children's Hospice International
2202 Mt. Vernon Ave., Ste. 3C
Alexandria, VA 22301
(800) 2-4-CHILD (242-4453)
(703) 684-0330
(703) 684-0226 (fax)
1,2,4,6,7

IMMUNE DEFICIENCY

See: Immune Disorders

IMMUNE DISORDERS

See also: Autoimmune Disorders

Immune Deficiency Foundation
25 W. Chesapeake Ave., Ste. 206
Towson, MD 21204
(800) 296-4433
(410) 321-6647
(410) 321-9165 (fax)
www.primaryimmune.org
??idf@clark.net
1,2,4,5,6,7,6,9; Spanish materials

IMPERFORATE ANUS

See: Anorectal Malformations

INCLUSION BODY MYOSTISIS

See: Immune Disorders

INCONTINENCE

National Association For Continence
PO Box 8310
Spartanburg, SC 29305
(800) 252-3337
(864) 579-7900
(864) 579-7902 (fax)
www.nafc.org
??sbrewer@nafc.org
1,2,7; Spanish materials

Simon Foundation For Continence
PO Box 815
Wilmette, IL 60091
(800) 237-4666
(847) 864-3913
(847) 864-9758 (fax)
1,2, 4, 7; French material

INCONTINENTIA PIGMENTI

See also: Ectodermal Dysplasias

National Incontinentia
Pigmenti Foundation
30 E. 72th St., 16th Fl.
New York, NY 10021
(212) 452-1231
(212) 452-1406 (fax)
www.medhelp.org/www/nipf.html
??nipf@pipeline.com
1,2,3,4,5,6,9

INCONTINENTIA PIGMENTI
ACHROMIANS

See: Ectodermal Dysplasias;
Epilepsy; Incontinentia Pigmenti

INDIA RUBBER SKIN

See: Ehlers-Danlos Syndrome

INFANTILE FACIO-SCAPULO-HUMERAL
MUSCULAR DYSTROPHY

See: Facio-Scapulo-Humeral
Muscular Dystrophy

INFANTILE HYPERCALCEMIA
SYNDROME, IDIOPATHIC

See: Williams Syndrome

INFANTILE SPASMS

See: Epilepsy

INTESTINAL NEURONAL DYSPLASIA

See: Intestinal Pseudo-Obstruction
Syndrome

INTESTINAL POLYPOSIS

See: Peutz-Jeghers Syndrome; Polyposis

INTESTINAL POLYPOSIS-CUTANEOUS
PIGMENTATION SYNDROME

See: Peutz-Jeghers Syndrome; Polyposi

INTESTINAL PSEUDO-OBSTRUCTION
SYNDROME

ASAP: American Society of
Adults with Pseudo-Obstruction
Young Adults Network
19 Carroll Rd.
Woburn, MA 01801-6161
(781) 935-9776
(781) 933-4151 (fax)
??asapgi@sprynet.com
1,2,3,4,7,8,9

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-BIELSCHOWSKY
DISEASE

See: Batten Disease; Tay-Sachs Disease

JEGHERS SYNDROME

See: Peutz-Jeghers Syndrome; Polyposis

JERVELL & LANGE-NIELSEN SYNDROME

See: Hearing Impairments; Long
Q-T Syndrome

JEUNE SYNDROME

See: Growth Disorders

JOHANSON-BLIZZARD SYNDROME

See: Craniofacial Disorders;
Ectodermal Dysplasias; Growth
Disorders; Hearing Impairments;
Short Stature

JORGENSON SYNDROME

See: Ectodermal Dysplasias

JOUBERT SYNDROME

See also: Apnea, Sleep

Joubert Syndrome Foundation
12348 Summer Meadow Rd.
Rock, MI 49880-9552
(906) 359-4707
(906) 359-4707 (fax)
www.erols.com/joubert
??joubert@match.org
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; Hemangioma;
Oilier Disease

KEARNS-SAYRE SYNDROME

See: Heart Disorders; Mitochondrial
Disorders; Retinitis Pigmentosa;
Visual Impairments

KERATITIS FOLLICULARIS
SPINULOSA DECALVANS

See: Ectodermal Dysplasias; Ichthyosis

KERATITIS-ICHTHYOSIS-DEAFNESS
(KID) SYNDROME

See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KETOACIDURIA

See: Maple Syrup Urine Disease

KETOTIC HYPERGLYCINEMIA

See: Acidemia, Organic

KID SYNDROME

See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KIDNEY DISEASES, HEREDITARY

See also: Cystinosis; Kidney
Diseases, Hereditary;
Oxalosis & Hyperoxaluria

Hereditary Nephritis Foundation
PO Box 57294
Murray, UT 84157-0294
(801) 262-1465
1,3,4

KIDNEY DISORDERS

See also: Cystinosis; Kidney
Diseases, Hereditary;
Oxalosis & Hyperoxaluria

American Association of
Kidney Patients
100 S. Ashley Dr., Ste. 280
Tampa, FL 33602
(800) 749-2257
(813) 223-7099
(813) 223-0001 (fax)
??aakpnat@aol.com
1,2,3,6,7,

American Kidney Fund
6110 Executive Blvd., Ste. 1010
Rockville, MD 20852
(800) 638-8299
(301) 881-0898 (fax)
www.arbon.com/kidney
??helpline@akfinc.org
1,2,6,8; Spanish materials, financial
assistance for treatment-related
expenses

Canadian Pediatric Kidney
Disease Research Center
401 Smith Rd.
Ottowa, ON CAN K1H 8L1
(613) 737-4098
(613) 738-4800 (fax)
www.cpkdrc.org
2,4

Kidney Foundation of Canada
300-5165 Sherbrooke St. W.
Montreal, PQ CAN H4A IT6
(514) 369-4806
(514) 369-2472 (fax)
??comm-mktg@kidney.ca
2,3,4,5,8; French/Chinese/
Punjabi materials

National Kidney Foundation
30 E. 33rd St., 11th Fl.
New York, NY 10016
(800) 622-9010
(212) 889-2210
(212) 689-9261 (fax)
www.kidney.org
1,2,4,5,7,8

Polycystic Kidney
Research Foundation
4901 Main St., Ste. 200
Kansas City, MO 64112-2674
(800) 753-2873
(816) 931-2600
(816) 931-8655 (fax)
www.kumc.edu/pkrf/
??pkdcure@pkfoundation.org
1,2,5,6,8;Spanish/French/German/
Italian/Japanese materials

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 Syndrome
and Associates
PO Box 119
Roseville, CA 95661-0119
(916) 773-2999
www.medhelp.org/web/ks.htm
??ks47xxy@ix.netcom.com
1,2,3,4,6,7,9; Spanish materials

Klinefelter's Syndrome
Association of America
N5879 30th Rd.
Pine River. WI 54965
(920) 987-5782
1,2,3,5

KLIPPEL-TRENAUNAY SYNDROME

See also: Nevi, Giant Congenital;
Sturge-Weber Syndrome;
Vascular Malformations

Klippel-Trenaunay Support Group
c/o Judy Vessey
4610 Wooddale Ave.
Edina, MN 55424
(612) 925-2596
(612) 333-8685 (fax)
www.umn.edu/vesse001
??vesse001@maroon.fc.umn.edu
1,2,3,6

KLIPPEL-TRENAUNAY-WEBER
SYNDROME

See: Klippel- Trenaunay Syndrome

KRABBE DISEASE

See: Leukodystrophy, Tay-Sachs Disease

KUFS DISEASE

See: Batten Disease; Tay-Sachs Disease

KUGELBERG-WELANDER DISEASE

See: Spinal Muscular Atrophy

KUSSMAUL-LANDRY PARAYLSIS

See: Guillain-Barre Syndrome

KYPHOSIS

See: Scoliosis

LACTATE DEHYDROGENASE
DEFICIENCY

See: Muscular Dystrophy

LACTIC ACIDOSIS

See also: Glutaric Aciduria, Type I;
Leigh Disease; Metabolic Disorders

Lactic Acidosis Support Group
1620 Mable Ave.
Denver, CO 80229
(303) 287-4953
2,3,4,9

LAMBERT-EATON SYNDROME

See: Muscular Dystrophy

LANDOUZY-DEJERINE
MUSCULAR DYSTROPHY

See: Facio-Scapulo-Humeral
Muscular Dystrophy

LANDRY ASCENDING PARAYLSIS

See: Guillain-Barre Syndrome

LANGERHANS CELL HISTIOCYTOSIS

See: Histiocytosis

LATEX ALLERGY

Latex Allergy Information Service
176 Roosevelt Ave.
Torrington, CT 06790
(860) 482-6869
(860) 482-2294 (fax)
www.latexallergyhelp.com
??76500.1452@compuserve.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
18 Strawberry Hill
Windsor, CT 06095
(203) 688-7880
1,2,8

LE JEUNE SYNDROME

See: Cri Du Chat Syndrome

LEARNING DISABILITIES

See also: Attention Deficit
Disorder; Dyslexia

Learning Disabilities
Association of America
4156 Library Rd.
Pittsburgh, PA 15234
(412) 341-1515
(412) 341-8077
(412) 344-0224 (fax)
www.ldanatl.org
??ldanatl@usaor.org
1,2,4,5,7; Spanish Materials

Learning Disabilities
Association of Canada
323 Chapel St., Ste. 200
Ottawa, ON CAN K1N 7Z2
(613) 238-5721
(613) 235-5391 (fax)
www.educ.queensu.ca/~ida
??ldactaac@ffox.nstn.ca
1,2,4,5,6,7; French materials

National Center for
Learning Disabilities
381 Park Ave. S., Ste. 1401
New York, NY 10016
(888) 575-7373 (inform)
(212) 545-7510
(212) 545-9665 (fax)
www.ncld.org
1,2,4,7

Parents of Gifted/LD Students
2420 Eccleston St.
Silver Spring, MD 20902-4925
(301) 986-1422
(301) 681-4884 (fax)
www.geocities.com/athens/1105/
gtld.htm
??jilmeyers@aol.com
1,2,3,4,5

Resource for Children with
Special Needs, Inc.
200 Park Ave. S., Ste. 816

New York, NY 10003
(212) 677-4650
(212) 254-4040 (fax)
??resourcenyc@prodigy.net
2,4

LEIGH'S DISEASE

See also: Lactic Acidosis;
Mitochondrial Disorders

National Leigh's
Disease Foundation
608 E. Waldron St., PO Box 2222
Corinth, MS 38834
(800) 819-2551
(601) 286-2551 (fax)
1,2,3,4,7,8,9

LENTICULAR DEGENERATION,
PROGRESSIVE

See: Wilson Disease

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

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: Chris Thomas
1110 Finch Ave. W., Ste. 220
Toronto, ON CAN M3J 2T2
(800) 268-2144 (Canada only)
(416) 661-9541
(416) 661-7799 (fax)
1,2,4,6

Leukemia Society of America
600 Third Ave., 4th Fl.
New York, NY 10016
(800) 955-4572
(212) 573-8484
(212) 450-8844
(212) 856-9686 (fax)
www.leukemia.org
1,2,3,4,5,7,8; Spanish materials

LEUKODYSTROPHY

See also: Myelin Disorders,
Tay-Sachs Disease

United Leukodystrophy Foundation
2304 Highland Dr.
Sycamore, IL 60178
(800) 728-5483
(815) 895-3211
(815) 895-2432 (fax)
??ulf@ceet.niu.edu
1,2,3,6,8,9; Spanish/French materials

LEUKODYSTROPHY,
METACHROMATIC

See: Leukodystrophy Tay-Sachs Disease

LIMB DISORDERS

See also: Amputation; Chorionic
Villus Sampling, Related Disabilities

Superkids: A Newsletter for
Families and Friends of Children
with Limb Differences
60 Clyde St.
Newton, MA 02460-2250
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

LIPOMYELOMENINGOCELE

Lipomyelomeningocele Family
Support Network
321 Hopewell St.
Birdsboro, PA 19508
(610)582-5937
www.home.ptd.net/~ifsn
??gmcafee@ptd.net

LISCH-NYHAN DISEASE

International Lesch-Nyhan
Disease Registry
Institute of Applied Research
PO Box 339
Peapack, NJ 07977
(908) 234-0618
(908) 234-0963
www.Mathenynj.com
??registry@mathenynj.com
2,3,9

LISSENCEPHALY

See also: Epilepsy

Lissencephaly Network
716 Autumn Ridge Ln.
Fort Wayne, IN 46804
(219) 432-4310 (voice/fax)
www.lissencephaly.org
??ltal@is2.nyu.edu
1,2,3,4,9

The Lissencephally Network,
Inc.--Canada Division
1549 Regent St.
Regina, SK CAN S4N 1S1
(306) 569-0146
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)
www.livertx.org
??Livers4Kids@earthlink.net
1,2,3,4,5,6,7,9; Spanish materials

LIVER DISEASES

See: Liver Disorders

LIVER DISORDERS

See also: Biliary Atresia

American Liver Foundation
1425 Pompton Ave.
Cedar Grove, NJ 07009
(800) 223-0179
(800) GO-LIVER (465-4837)
(888) 4-HEP-ABC (443-7222)
(201) 256-2550
(201) 256-3214 (fax)
www.liverfoundation.org
??webmail@liverfoundation.org
1,2,4,5,7,8,9; Spanish materials

Canadian Liver Foundation
365 Bloor St. E, Ste. 200
Toronto, ON CAN M4W 3L4
(800) 563-5483 (Canada only)
(416) 964-1953
(416) 964-0024 (fax)
www.liver.ca/
??clf@liver.ca
2,5,6,8; French materials

United Liver Association
3021 Airport Ave.
Santa Monica, CA 90064-2987
(310) 313-0707
(310) 575-5595 (fax)
1,2,6,8

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 QT
Syndrome Registry
PO Box 653
University of Rochester Medical Ctr.
Rochester, NY 14642-8653
(716) 275-5391
(716) 473-2751 (fax)
4,9

Sudden Arrhythmia Death
Syndromes Foundation
508 E. South Temple, Ste. 20
Salt Lake City, UT 84102
(800) 786-7723
(801) 531-0945 (fax)
www.sads.org
??sads@mail.aros.net
1,2,3,4,5,7,8,9; Spanish materials

LORDOSIS

See: Scoliosis

LOWE SYNDROME

See also: Arthritis; Cystinuria,
Glaucoma; Growth Disorders; Kidney
Disorders; Metabolic Disorders;
Visual Impairments

Lowe Syndrome Association
222 Lincoln St.
W. Lafayette, IN 47906
(765)743-3634
www.medhelp.org/lowesyndrome
??lsa@medhelp.org
1,2,3,6,8,9; Japanese/French/
Norwegian materials

LOWE-BICKEL SYNDROME

See: Lowe Syndrome

LOWE-TERRY-MACHLACHLAN
SYNDROME

See: Lowe Syndrome

LUNG DISEASES

American Lung Association
1740 Broadway, 14th Fl.
New York, NY 10019
(800) LUNG-USA (586-4872)
(212) 265-5642 (fax)
(212) 315-8872
www.lung.usa.org
??info@lungusa.org
2,4,5,6,7,8; Spanish materials

Canadian Lung Association
Attn: Alana Fox
1900 City Park Dr., Ste. 508
Gloucester, ON CAN K1J 1A3
(613) 747-6776
(613) 747-7430 (fax)
www.lung.ca
??info@lung.ca
2,4,5,6,7

LUPUS ERYTHEMATOSIS

American Lupus Society
260 Maple Ct., Ste. 123
Ventura, CA 93003
(800) 331-1802 (info line)
(805) 339-0443
(805) 339-0467 (fax)
1,2,4,5,8

Lupus Canada
PO Box 64034
5512 4th NW
Calgary, AB CAN T2K 6J1
(800) 661-1468
(403) 274-5599(fax)
www.lupuscanada.org
??lupuscan@cadvision.com
2,4,5,6,7,8; French materials

Lupus Foundation of America
1300 Picard Dr., Ste. 200
Rockville, MD 20850
(800) 558-0121
(800) 558-0231 (Spanish)
(301) 670-9292
(301) 670-9486 (fax)
www.lupus.org/lupus
1,2,4,5,6,7,8; Spanish materials

SLE Foundation
149 Madison Ave., Ste. 205
New York, NY 10016
(212) 685-4118
(212) 545-1843 (fax)
www.holausa.com/lupustemp
??lupus@lupus.ny
1,2,3,4,5,6,7,8; Spanish materials

LYME DISEASE

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)
www.lyme.org
??lymefnd@aol.com
1,2,4,6,7; Spanish materials

Lyme Disease Resource Center
PO Box 1423
Santa Rosa, CA 95482
(707) 468-8460
??pcm@pacific.net
1,2,4,6,7

LYMPHANGIOMA

See: Vascular Malformations

LYMPHANGIOMA, CAVERNOUS

See: Lymphatic Malformations

LYMPHATIC MALFORMATIONS

See also: Vascular Malformations

CALM: Children Anguished with
Lymphatic Malformations
16 River Bend Rd.
Montgomery. IL 60538
(708) 906-9028
1,2,3,4,9

LYMPHOHISTIOCYTOSIS,
FAMILIAL ERYTHROPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
HEMOPHAGOCYTIC

See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
MALIGNANT

See: Cancer; Histiocytosis

LYMPHOMA

See: Leukemia

MACULAR DISEASES

See also: Retinitis Pigmentosa; Usher
Syndrome; Visual Impairments

Association for Macular Diseases
210 E. 64th St.
New York, NY 10021
(212) 605-3719
(212) 605-3795 (fax)
www.macula@macula.org
??macula@macula.org
1,2,4

Macular Degeneration Foundation
PO Box 9752
San Jose, CA 95157
(888) 633-3937
(408) 260-1335
(408) 260-1336
www.eyesight.org
??eyesight@eyesight.org
1,2,4,9

Stargardt Macular Dystrophy
and Other Juvenile Macular
Dystrophies Self Help Network
c/o Macular Degeneration International
2968 West Oma Rd. #106
Tucson, AZ 85741
(800) 393-7634
(520) 797-2525
(520) 797-8018 (fax)
??Perski@aol.com

MACULAR DYSTROPHIES,
JUVENILE

See: Macular Diseases; Stargardt Disease

MAFFUCCI SYNDROME

See: Cancer; Hemangioma;
Oilier Disease

MALE SEX
CHROMOSOME DISORDERS

See Klinefelter Syndrome

MALIGNANT HYPERTHERMIA

Malignant Hyperthermia Association
200 Elizabeth St.
CCRW, Rm. 2-834
Toronto, ON CAN M5G 2C4
(416) 340-3238
(416) 340-4960 (fax)
www.mhassn.com
??mha@mhassn.com
1,2,8

Malignant Hyperthermia
Association of United States
32 S. Main St., PO Box 1069
Sherburne, NY 13460
(800) 986-4287
(607) 674-7901
(800) 674-7910 (fax)
gasnet.med.yale.edu/homepage.html
??mhaus@norwich.net
1,2,9; Spanish/Italian materials

North American Malignant
Hyperthermia Registry of the
Hyperthermia Association of the
United States (MHAUS)
Dept of Anesthesia
Penn State Univ.
PO Box 850 Hershey, PA 17033
(717) 531-6936
(717) 531-6221 (fax)
www.mhaus.org
??mhaus@norwich.net
9; provides physicians with
summaries of consenting,
registered patients' anesthesia
histories

MANDIBULOFACIAL DYSOSTOSIS

See also Nager & Miller Syndromes;
Treacher Collins Syndrome

MANNOSIDOSIS

See also Tay-Sachs Disease

MAPLE SYRUP URINE DISEASE

See also: Acidemia, Organic;
Metabolic Disorders

Maple Syrup Urine Disease
Family Support Group
24806 State Rd. 119
Goshen, IN 46526
(219) 862-2992
(219) 862-2012 (fax)
www.msud-support.org/
??jbrubacher@juno.com
1,2,3,4,6,8

MARDEN-WALKER SYNDROME

See: Cleft Palate; Connective Tissue
Disorders; Growth Disorders

MARFAN SYNDROME

See also: Connective Tissue
Disorders; Heart Disorders; Scoliosis

Canadian Marfan Association
Central Plaza PO
128 Queen St. S., PO Box 42257
Mississauga, ON CAN L5M 4Z0
(905) 826-3223
(905) 826-2125 (fax)
??marfan@istar.ca
1,2,4,5,8,9

National Marfan Foundation
382 Main St.
Port Washington, NY 11050
(516) 883-8712
(516) 883-8040 (fax)
www.marfan.ca
??staff@marfan.ca
1,2,3,4,5,6,7,8

MARKER X SYNDROME

See: Fragile X Syndrome

MAROTEAUX-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
4771 Waynes Trace Rd.
Hamilton, OH 45011
(513) 726-4642
(513) 726-4601 (fax)
www.gil.com.au/comm/mast/
??masto@dmv.com
1,2,3

MCARDLE DISEASE

See: Glycogen Storage Diseases;
Muscular Dystrophy

MEDITERRANEAN ANEMIA

See: Cooley Anemia

MEDIUM-CHAIN ACYL
-COA DEHYDROGENASE
DEFICIENCY (MCAD)

See: Fatty Oxidation Disorder

MEDULLOBLASTOMA,
HEREDITARY

See: Brain Tumors

MEERKEREN-EHLERS-DANLOS
SYNDROME

See: Ehlers-Danlos Syndrome

MEIGE DISEASE

See: Lymphedema

MELANOLEUCODERMA
ECTODERMAL DYSPLASIAS

See: Peutz-Jeghers Syndrome; Polyposis

MELAS SYNDROME

See: Growth Disorders, Lactic
Acidosis, Mitochondrial Disorders

MELNICK NEEDLES SYNDROME

See: Growth Disorders

MEN SYNDROME I

See: Multiple Endocrine Neoplasia I

MENIERE SYNDROME

See: Crouzon Disease

MENINGEAL CAPILLARY
ANGIOMATOSIS

See: Sturge-Weber Syndrome

MENKES DISEASE

See: Liver Disorders; Metabolic Disorders

Corporation for Menkes Disease
5720 Buckfield Ct.
Fort Wayne, IN 46804
(219) 436-0137
1,2,3,6,9; parent-professional
network

MENTAL ILLNESS

Canadian Mental Health Association
2160 Yonge St.
Toronto. ON CAN M4S 2Z3
(416) 484-7750
(416) 484-4617 (fax)
www.icomm.ca/cmhacan
??cmhanat@interlog.com
1,2,4,5,6,7; French materials

Federation of Families for
Children's Mental Health
1021 Prince St.
Alexandria, VA 22314-2971
(703) 684-7710
(703) 836-1040 (fax)
www.cals.com/vikings/nami/
index.html
??ffcmh@crosslink.net
1,2,3,4,5,6,7; Spanish materials

National Alliance for the
Mentally III
200 N. Glebe Rd., Ste. 1015
Arlington, VA 22203-3754
(703) 524-7600
(703) 524-9094 (fax)
www.nami.org
??NAMIOFFC@aol.com
1,2,3,4,5,6,7,8

National Mental Health Association
1021 Prince St.
Alexandria. VA 22314-2971
(800) 969-6642 (info line)
(703) 684-5968
www.cais.com/vikings/nami/
index.html
??namiofc@aol.com
1,2,3,4,5,6,9

MENTAL RETARDATION

See also; Mental Illness; Mental
Retardation/Mental Illness

The Arc
500 E. Border St., Ste. 300
PO Box 1047
Arlington, TX 76010
(800) 433-5255
(817) 261-6003
(817) 277-0553 (TTY)
(817) 277-3491 (fax)
www.TheArc.org/welcome.html
??thearc@metronet.com
1,2,4,5,6,7,8; Spanish materials

Bethpage
2245 Midway Rd.
Carrolton, TX 75006
(972) 866-9989
(972) 991-0834
??psanchez@bethpage.org
1,2

Bethphage Mission, Inc.
Lind Center, Ste. A
4980 S. 118th St.
Omaha, NE 68137-2220
(402) 896-3884
(402) 896-1511 (fax)
www.bethphage.org
??psanchez@bcthphage.org

Canadian Association for
Community Living &
The Roeher Institute
4700 Keele St.
Kinsman Bldg. York University
North York, ON CAN M3J 1P3
(416) 661-9611
(416) 661-2023 (TTY)
(416) 661-5701 (FAX)
www.roeher.ca
www.cacl.ca
??info@roeher.ca
??info@cacl.ca
1,2,3,4,5,6,7,8,9; French materials

People First International
PO Box 12642
Salem, OR 97309
(503) 362-0336
(503) 585-0287 (fax)
www.open.org/people1/people1/:htm
??heathd@open.org
1,2,4,5,6,7; leadership/selfadvocacy
training

Voice of the Retarded
5005 Newport Dr., Ste. 108
Rolling Meadows, IL 60008
(847) 253-6020
(847) 253-6054 (fax)
??vor@compuserve.com
1,2,3,4,7

MENTAL RETARDATION/
MENTAL ILLNESS

See also: Mental Illness;
Mental Retardation

(AAMR) American Association
on Mental Resources
44 N. Capitol St., Ste. 846
Washington, DC 20001
(800) 424-3688
(202) 387-1968
(202) 387-2193 (fax)
www.aamr.org
??aamr@access.digex.net
1,2,4,5,6

Developmental Disabilities
Nurses Association (DDNA)
Attn: Randy Bryson
1720 Willow Creek Circle, Ste. 515
Eugene, OR 97402
(800) 888-6733
(541) 485-7372 (fax)
??ddnahq@aol.com
1,2,5,6

National Association of the
Dually Diagnosed (NADD)
132 Fair St.
Kingston, NY 12401
(800) 331-5362
(914) 331-4336
(914) 331-4569 (fax)
??nadd@ulster.net
1,2,3,4,5,6,7; regional conferences

MERRF SYNDROME

See: Myoclonus; Mitochondrial Disorders

METABOLIC DISORDERS

See also: Acidemia, Organic;
Galactosemia; Lactic Acidosis; Maple
Syrup Urine Disease; Niemann-Pick
Disease; Phenylketonuria (PKU)

Association for
Neurometabolic Disorders
5223 Brookfield Ln.
Sylvania, OH 43560-1809
(419) 885-1497
1,3,6

Canadian Society for
Metabolic Disease
3738 Sunset St.
Barnaby, BC CAN V5G 1T2
(604) 435-0085 (voice/fax)
1,2,3,4,6,8,9

Metabolic Information Network
PO Box 670847
Dallas, TX 75367-0847
(800) 945-2188 (USA/Canada)
(214) 696-2188
(800) 955-3258 (fax, USA/Canada)
(214) 696-3258 (fax)
??mizesg@ix.netcom.com
1

The Research Trust for
Metabolic Diseases in
Children (RTMDC)
Golden Gates Lodge
Weston Road, Crewe
Cheshire, England CW25XN
00441270 250221
00441270 250244 (fax)
1,2,3,4,5,6,7,8,9; English, French,
German, Spanish materials
Metabolic Disorders

The World Life Foundation
PO Box 571
Bedford, TX 76095-5433
(800) 289-5433
1,4

METACHROMATIC
LEUKODYSTROPHY

See: Leukodystrophy Tay-Sachs Disease

METAPHYSEAL DYSOSTOSIS,
TYPE B IV

See: Shwachman Syndrome

METATROPHIC DYSPLASIA

See: Dwarfism, Metatrophic

METHYLMALONIC ACIDEMIA

See: Acidemia, Organic

MICROCEPHALY

Microcephaly Network
362 Jean Talon
St. Vanier, ON CAN K1L 6T9
(613) 742-5936
www.microcephaly.org
??amanda@inetdirect.com

MICROPHTHALMIA

See: Anophthalmia; Visual Impairments

MICROSOMIA, HEMIFACIAL

See: Craniofacial Disorders;
Goldenhar Syndrome

MICROTIA

See also: Craniofacial Disorders

Microtia-Atresia Support Group
c/o Jack Gross
330 7th Ave., #1203
New York, NY 10001
(212) 947-0770
(212) 714-1224 (fax)
??grossinsco@aol.com

MIKAELIAN SYNDROME

See: Ectodermal Dysplasias

MILLER SYNDROME
See: Nager & Miller Syndromes

MILLER-DIEKER SYNDROME

See: Lissencephaly

MILLER-FISCHER SYNDROME

See: Guillain-Barre Syndrome

MILROY DISEASE

See: Lymphatic
Malformations; Lymphedema

MITOCHONDRIAL DISORDERS

COX Foundation for All
Mitochondrial Diseases
PO Box 1151
Monroeville, PA 15146-1151
(412) 856-1297
(412) 856-7072 (fax)
biochemgen.ucsd.edu/umdf/
1,2,3,5,6,7,8,9

MITOCHONDRIAL MYOPATHY

See: Mitochondrial Disorders;
Muscular Dystrophy

MOEBIUS SYNDROME

See: Craniofacial Disorders;
Limb Disorders

Moebius Syndrome Support Group
38883 FoxHolm Dr.
Palmdale, CA 93551
(805) 267-2570 (voice/fax)
www.wincom.net/moebius/
??1orit@netport.com
1,2,3,6,8,9

MONOSOMY X

See: Turner Syndrome

MORQUIO SYNDROME

Mucopolysaccharidosis; Tay-Sachs
Disease

MORVAN DISEASE

See: Syringomyelia

MOTOR-SENSORY
NEUROPATHY, HEREDITARY

See: Charcot-Marie-Tooth Disease

MOYAMOYA DISEASE

See: Stroke; Vascular Malformations

Families with Moyamoya Network
c/o Dawn Gruettner
4900 McGowan St. SE
Cedar Rapids, IA 52403
(800) 261-6692
2,3

MUCOLIPIDOSES

See: Mucopolysaccharidosis;
Mucolipidosis Type IV;
Tay-Sachs Disease

MUCOLIPIDOSIS TYPE IV

See: Mucopolysaccharidosis; Tay-Sachs
Disease; Visual Impairments

ML4 Foundation
719 E. 17th St.
Brooklyn, NY 11230
(718) 434-5067
(718) 859-7371
www.ml4.org
??ml4@aol.com
1,2,3,4,5,7,6,9

MUCOPOLYSACCHARIDOSIS

See: Metabolic Disorders;
Tay-Sachs Disease

National Mucopolysaccharidosis
Society (MPS)
17 Kraemer St.
Hicksville, NY 11801
(516) 931-6338
(516) 822-2041
www.members.aol.com/mpssociety/index.html
??cohenzec@aol.com
1,2,3,4,5,6,6,9; Spanish materials

MUCOSULFATIDOSIS

See: Hearing Impairments;
Ichthyosis; Leukodystrophy; Tay-Sachs
Disease

MULTIPLE CARBOXYLASE
DEFICIENCY

See: Metabolic Disorders

MULTIPLE CARTILAGNOUS
ENCHONDROSES

See: Ollier Disease

MULTIPLE ENDOCRINE
NEOPLASIA I

See also: Adrenal Disorders;
Diabetes Mellitus; Thyroid Disorders.

Multiple Endocrine Neoplasia I
c/o Mrs. Cathy McMillan-Fitch
Box 100
Meota, SK CAN S0M 1X0
(306) 892-2080
3,9

MULTIPLE SCLEROSIS

Multiple Sclerosis Society
of Canada
250 Bloor St. E., Ste. 1000
Toronto, ON CAN M4W 3P9
(800) 361-2985 (Canada only)
(416) 922-6065
(416) 922-7238 (fax)
www.mssoc.ca
??info@mssoc.ca
1,2,4,6,7,8,9

National Multiple Sclerosis Society
733 3rd Ave., 6th Fl.
New York, NY 10017-3288
(800) 344-4867
(212) 986-3240
(212) 986-7981 (fax)
www.nmss.org
??nat@nmss.org
1,2,4,5,8; Spanish materials

MULTIPLE SULFATASE DEFICIENCY

See: Hearing Impairments;
Ichthyosis; Leukodystrophy; Tay-Sachs
Disease

MUSCLE
PHOSPHOFRUCTOKINASE
DEFICIENCY

See: Glycogen Storage Diseases;
Muscular Dystrophy

MUSCLE PHOSPHORYLASE
DEFICIENCY

See: Glycogen Storage Diseases;
Muscular Dystrophy

MUSCULAR ATROPHY, PERONEAL

See: Charcot-Marie-Tooth Disease

MUSCULAR DYSTROPHY

See also: Facio-Scapulo-Humeral
Muscular Dystrophy; Ventilator Use

Duchenne Parent Project
125 Marymount Ct.
Middletown, OH 45042-3755
(800) 714-KIDS (5437)
(513) 424-7452
(513) 425-9907
www.parentdmd.org
??patfurlong@aol.com

MUSCULAR DYSTROPHY
DEJERINE-LANDOUZY

See: Facio-Scapulo-Humeral
Muscular Dystrophy; Ventilator Use

Muscular Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3208
(800) 572-1717
(520) 529-2000
(520) 529-5300 (fax)
www.mdausa.org
??74431.2513@compuserve.com
1,2,3, 4,5,8; Spanish materials,
local clinics, financial assistance
for wheelchair purchases,
summer camps

Muscular Dystrophy Association
of Canada
2345 Yonge St., Ste. 901
Toronto, ON CAN M4P 2E5
(800) 567-2873 (Canada only)
(416) 488-0030
(416) 488-7523(voice/fax)
www.mdac.ca
??ragbar@mdac.ca
1,2,3,4,5,6,8,9; French materials

Society for Muscular Dystrophy
Information International
PO Box 479
Bridgewater, NS CAN B4V 2X6
(902) 685-3961
(902) 685-3962 (fax)
??smdi@aura.com.com
1,4

MYASTHENIA GRAVIS

Myasthenia Gravis Association
25 Caravan Dr.
North York, ON CAN M3B 1M9
(416) 444-8357
1,2,4,5,8,9

Myasthenia Gravis Foundation
of America
222 S. Riverside Plaza, Ste. 1540
Chicago, IL 60606
(800) 541-5454
(312) 258-0461 (fax)
www.med.unc.edu/mgfa/
??myastheniagravis@msn.com
1,2,4,5,6,7,8,9; Spanish materials

MYASTHENIC SYNDROME OF
LAMBERT-EATON

See: Muscular Dystrophy

MYELIN DISORDERS

See also: Leukodystrophy;
Myelin, Insufficient

The Myelin Project
1747 Pennsylvania Ave. NW, Ste. 950
Washington DC 20006
(202) 452-8994
(202) 785-9578 (fax)
www.myelin.org/
??myelin@erols.com
1,2,8; Italian/French/German/
Danish/Spanish materials

The Myelin Project of Canada
c/o Julie and Wayne Simmons
4330 Spinningdale Ct.
Mississauga, ON CAN L5M 3J8
(905) 567-8843
(905) 567-9189 (fax)
2,6,7,8,9

MYELODYSPLASIA

See; Anemia, Aplastic

MYELOMA

See: Cancer; Leukemia

International Myeloma Foundation
2129 Stanley Hills Dr.
Los Angeles, CA 90046
(800) 452-2873
(213) 654-3023
(213) 656-1182 (fax)
www.comed.com/imf/imf.html
??theimf@aol.com
1,2,3,4,6,7,8

MYELOMA, MULTIPLE

See: Myeloma

MYELOSYRINGOSIS

See: Syringomyelia

MYOADENYLATE DEAMINASE
DEFICIENCY

See: Muscular Dystrophy

MYOCLONUS

See also: Epilepsy; Opsoclonus-Myoclonus
Syndrome

Moving Forward
2934 Glenmore Ave.
Kettering, OH 45409
(513) 293-0409
www.acor.org/diseases/
hematology/mpd
??editormdp@aol.com
2

MYODENYLATE DEAMINASE
DEFICIENCY

See: Muscular Dystrophy

MYOPATHIES, CONGENITAL

See: Myotubular Myopathy, X-Linked

MYOPATHY, CENTRONUCLEAR

See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

MYOPATHY, HYPOTHYROID

See: Muscular Dystrophy;
Thyroid Disorders

MYOPHOSPHORYKASE DEFICIENCY

See: Glycogen Storage Diseases

MYOSITIS AUTOIMMUNE
DISORDERS

National Myositis Association
7720B El Camino Real, Ste. 367
Rancho La Costa, CA 92009
(800) 230-0441
(619) 436-2185
1,2,3,4,5,9

MYOSITIS OSSIFICANS

See: Fibrodysplasis Ossificans Progressiva

MYOTONIA, CONGENITA

See: Muscular Dystrophy

MYOTUBULAR MYOPATHY,
X-LINKED

See also: Muscular Dystrophy

X-Linked Myotubular Myopathy
Resource Group
2602 Quaker Dr.
Texas City, TX 77590
(409) 945-8569
www.mtmrg.org
??gscoggin@aol.com
1,2,3,9

MYXEDEMA

See: Thyroid Disorders

N-ACETYL GLUTAMATE
SYNTHETASE (NAGS) DEFICIENCY

See: Urea Cycle Disorders

NAEFELI-FRANCESCHETTI-JADASSOHN
DYSPLASIA

See: Ectodermal Dysplasias

NAEGELI-FRANCESCHETTI-JADASSOHN
SYNDROME

See: Incontinentia Pigmenti

NAGER & MILLER SYNDROMES

See also: Craniofacial Disorders;
Hearing Impairments; Limb Disorders

Foundation for Nager and Miller
Syndromes (FNMS)
1827 Grove St. #2
Glenview, IL 60025-2913
(800) 507-3667
(847) 724-6449 (fax)
www.nagerormillersynd.com
??fnms@interaccess.com
1,2,3,4,5,6,8,9

NASAL ENCEPHALOCELE

See: Craniofacial Disorders

NEMALINE MYOPATHY

See: Muscular Dystrophy

NEPHRITIS

See: Kidney Diseases, Hereditary
Neurodevelopmental Abnormalities,
Fetal Alcohol Syndrome

NEUROFIBROMATOSIS

See also: Acoustic Neuroma; Hearing
Impairments; Visual Impairments

National Neurofibromatosis
Foundation
95 Pine St., 16th Fl.
New York, NY 10005
(800) 323-7938 (voice/TTY)
(212) 344-6633
(212) 747-0004 (fax)
www.nf.org
??nnff@aol.com
1,2,4,5,8

Neurofibromatosis, Inc.
8855 Annapolis, Ste. 110
Lanham, MD20706-2924
(800) 942-6825
(301) 577-8984
(301) 577-0016 (fax)
members.gnn.com/nfic/page1.htm
??nfinc@gnn.com
1,2,3,4,5,7,8

Neurofibromatosis Society
of Ontario
923 Annes St.
Whitby, ON CAN L1N 5K7
(905) 430-6141 (voice/fax)
1,2,4,6,8

NEUROLOGICAL DISORDERS

Association for
Comprehensive Neurotherapy
1128 Royal Palm Beach Blvd. #283
Royal Palm Beach, FL 33411
(561) 798-0472
(561) 798-9820 (fax)
www.latitudes.org
[Omega]acn@latitudes.org

Making Headway Foundation, Inc.
115 King St.
Chappaqua, NY 10514-3460
(914) 238-8384
(914) 238-1693 (fax)
1,2,4,8

NEUROMETABOLIC DISORDERS

See: Metabolic Disorders

NEURONAL CEROID
LIPOFUSCINOSES

See: Batten Disease

NEUROPATHY, HEREDITARY,
SENSORY MOTOR

See: Charcot-Marie-Tooth Disease

NEUROPATHY, PERIPHERAL

See: Charcot-Marie-Tooth Disease

NEUTROPENIA

Neutropenia Support Association
PO Box 243
905 Corydon Ave.
Winnipeg, MB CAN R3M 3S7
(800) 663-8876
(204) 489-8454
www.neutropenia.ca
??stevensl@neutropenia.ca
1,2,3,4,5,6,7,8,9; 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)
www.scnir.medicine.washington.edu/
??registry@u.washington.edu
1,2

NEUTROPENIA-PANCREATIC
INSUFFICIENCY

See: Shwachman Syndrome

NEVI, GIANT CONGENITAL

See also: Craniofacial Disorders;
Ichthyosis; Klippel-Trenaunay
Syndrome; Sturge-Weber Syndrome;
Vascular Malformations

Nevus Network
PO Box 1981
Woodbridge, VA 22193
(703) 492-0253
www.nevusnetwork.org
??nevusnet@bigfoot.com
1,2,3,9; French/Spanish materials

NEVILLE DISEASE

See: Niemann-Pick Disease

NEVO SYNDROME

See: Sotos Syndrome

NIEMANN-PICK DISEASE

See also: Ataxia; Metabolic
Disorders; Tay-Sachs Disease

Ara Parseghian Medical
Research Foundation
1760 E. River Rd., Ste. 115
Tucson, AZ 85718
(520) 577-5106
(520) 577-5212 (fax)
www.parseghian.org
??victory@axstarnet.com

NONKETOTIC HYPERGLYCINEMIA

See: Acidemia, Organic

NONNE-MILROY-MEIGE
SYNDROME

See: Lymphatic Ma/formations;

NOONAN SYNDROME

See: Cardio-Facio-Cutaneous
Syndrome; Growth Disorders; Heart
Disorders; Malignant Hyperthermia;
Williams Syndrome

(TNSSG) Noonan Syndrome
Support Group, Inc.
PO Box 145
Upperco, MD 21155
(888) 686-2224
(410) 374-5245
www.noonansyndrome.org
??wandar@bellatlantic.net

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)
www.neuro-www.mgh.harvard.edu
??sims@helix.mgh.harvard.edu
2,3,4

NUTRITION

The Oley Foundation
214 Hun Memorial A-23
Albany Medical Center
Albany, NY 12208
(800) 776-OLEY (6539)
(578) 262-5079
(518) 262-5528
www.wizvax.net/oleyfdn
??joan_bishop@ccgateway.amc.edu

NYHAN SYNDROME

See: Lesch-Nyhan Syndrome

OAV SYNDROME

See: Goldenhar Syndrome

OBSESSIVE-COMPULSIVE
DISORDER

OC Foundation
PO Box 70
Milford, CT 06460
(203) 878-5669
(203) 874-2826 (fax)
pages.prodigy.com/alwillen/ocf.html
??jphs28a@prodigy.com
1,2,3,4,5,6,7,8

OBSTRUCTIVE HYDROCEPHALUS
See: Dandy-Walker Syndrome

OCULO-AURICULO-VERTEBRAL
SPECTUM

See: Goldenhar Syndrome

OCULOCEREBRORENAL
SYNDROME

See: Lowe Syndrome

OCULODENTODIGITAL
SYNDROME; TYPE I & II

See: Ectodermal Dysplasias

OCULOOSTEOCUTANEOUS
SYNDROME

See: Ectodermal Dysplasias

ODONTOONYCHODERMAL
DYSPLASIA

See: Ectodermal Dysplasias

ODONTOONYCHOHYPOHIDROTI
C DYSPLASIA

See: Ectodermal Dysplasias

ODONTOTRICHODYSPLASIA
WITH NEUTROPENIA

See: Ectodermal Dysplasias; Neutropenia

ODONTOTRICHOMELIC
SYNDROME

See: Ectodermal Dysplasias

OLDFIELD SYNDROME

See: Peutz-Jeghers Syndrome; Polyposis

OLIGOPHRENIA-MICROPHTHALMOS

See: Norrie Disease

OLIGOSACCHARIDOSES

See: Tay-Sachs Disease

OLLIER DISEASE

See also: Growth Disorders

Ollier's/Maffuci Self-Help Group
c/o Bonnie Hatch-schmid Founder
c/o Hermann Schmid Secretary
Newletters Offices
1824 Millwood Rd.
Sumter, SC 29150
(803) 775-1757
(803) 469-9749
www.uhsweb.edu.olliers/olliers.htm
??olliers@aol.com
1,3,4,9

ONDINE'S CURSE

See: Central Hypoventilation
Syndrome, Congenital

OPHTHALMOARTHROPATHY

See: Stickler Syndrome

OPITZ FG SYNDROME

See: Opitz 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 (voice/fax)
www.rkymtnhi.com/opitz
??opitznet@rkymtnhi.com
1,2,3,9

OPITZ-BBBG
COMPOUND SYNDROME

See: Opitz Syndrome

OPITZ-FRIAS SYNDROME

See: Opitz Syndrome

OPSOCLONUS-MYOCLONUS
SYNDROME

See also: Epilepsy; Myoclonus

Opsoclonus-Myoclonus Parent-Talk
Support Network
c/o Connie Quinn
725 North St.
Jim Thorpe, PA 18229
(717) 325-3302
www.geocities:com/hotsprings/spa/2
??clquinn@ptd.net3

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

OSTEOGENESIS IMPERFECTA

See also: Growth Disorders

Canadian Osteogenesis
Imperfecta Society
128 Thornhill Crescent
Chatham, ON CAN N7L 4M3
(519) 436-0025
(519) 351-4043 (fax)
??mkearney@kent.net
1,2,3,6

Osteogenesis Imperfecta Foundation
804 West Diamond Ave., Ste. 210
Gaithersburg, MD 20878
(800) 981-2663
(301) 947-0083
(301) 947-0456 (fax)
members.aol.com/bonelink/
??bonelink@aol.com
1,2,3,4,5,6, 7,8,9; Spanish materials

OSTOMY

United Ostomy Association, Inc.
19722 MacArthur Blvd., Ste. 200
Irvine, CA 19772
(800) 826-0826
(949) 660-8624
(949) 660-9262 (fax)
www.uoa.org
??uoa@deltanet.com
1,2,4,5,6,7

United Ostomy Association of
Canada, Inc.
PO Box 46057, College Park PO
444 Yonge St.
Toronto, ON CAN M5B 2L8
(416) 595-5452
(416) 595-9924 (fax)
business.atcon.com/voacanada/
??uoacan@magic.com
1,2,3,4,5,6,7,9; youth network

OXALOSIS & HYPEROXALURIA

See also: Kidney Disorders

Oxalosis & Hyperoxaluria
Foundation
12 Pleasant St.
Maynard, MA 01754
(888) 721-2432
(978) 461-0614
www.ohf.org
??ohf@ohf.ultranet.com
1,2,3,8,9

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 Disorders

Pallister-Hall Foundation
RFD Box 3000, Fairground Rd.
Bradford, VT 05033
(802) 222-9683
??messer@sover.net
2,3,4,9

PALLISTER-KILLIAN SYNDROME

See also: Epilepsy

Pallister-Killian Family
Support Network
3700 Wyndale Ct.
Ft Worth, TX 76109
(817) 927-8854
(817) 927-2073 (fax)
3

PALMOPLANTAR HYPERKERATOSIS
AND ALOPECIA

See: Ectodermal Dysplasias

PANCREATIC INSUFFICIENCY
WITH NEUTROPENIA

See: Shwachman Syndrome

PANCYTOPENIA, CONGENITAL

See: Anemia, Fanconi

PANHYPOPITUITARISM

See: Growth Disorders

PANMYELOPATHY

See: Anemia, Aplastic

PANMYELOPHTHISIS

See: Anemia, Aplastic

PAPILLOMAS

See: Respiratory Pappillomatosis, 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

PARRY-ROMBERG SYNDROME

See: Craniofacial Disorders

PATIN SYNDROME

See: Fibrodysplasis Ossificans Progressiva

PDD

See: Autism

PELIZAEUS-MERZBACHER
DISEASE

See: Leukodystrophy

PEMPHIGUS, FAMILIAL

See: Ichthyosis

PEPCK DEFICIENCY

See: Lactic Acidosis;
Mitochondrial Disorders

PERIPHERAL NEUROPATHY

See: Charcot-Marie-Tooth Disease

PERONEAL MUSCULAR ATROPHY

See: Charcot-Marie-Tooth Disease

PERVASIVE DEVELOPMENTAL
DISORDER (PDD)

See: Autism

PEUTZ-JEGHERS SYNDROME

See also: Polyposis

Hereditary Colon Cancer Registry
c/o Jill D. Brensinger
Johns Hopkins Hospital
550 N. Broadway, Ste. 108
Baltimore, MD 21205
(410) 614-4038
(410) 614-9544 (fax)
??hccregistry@jhmi.edu
2,3,4,8,9

PEUTZ-TOURAINE SYNDROME

See: Peutz-Jeghers Syndrome; Polyposis

PFEIFFER SYNDROME

See: Craniofacial Disorders

PHAKOMATOSIS

See: Tuberous Sclerosis

PHENYLKETONURIA (PKU)

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
1,2,3,4,9; Spanish materials

Metabolic Disorders
National PKU News
c/o Virginia Schuett
6869 Woodlawn Ave. NE, Ste. 116
Seattle, WA 98115-5469
(206) 525-8140
(206) 525-5023 (fax)
www.wolfenet.com/~kronmal
??schuett@pkunews.org

PHOSPHOENOLPYRUVATE
CARBOXYKINASE DEFICIENCY

See: Lactic Acidosis;
Mitochondrial Disorders

PHOSPHOFRUCTOKINASE
DEFICIENCY

See: Glycogen Storage Diseases;
Muscular Dystrophy

PHOSPHOGLYCERATE KINASE
DEFICIENCY

See: Muscular Dystrophy

PHOSPHOGLYCERATE MUTASE
DEFICIENCY

See: Muscular Dystrophy

PHOSPHORYLASE B
KINASE DEFICIENCY

See: Glycogen Storage Diseases;
Muscular Dystrophy

PHOSPHORYLASE DEFICIENCY

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

Pituitary Network Association
16350 Ventura Blvd., Ste. 231
Encino, CA 91436
(805) 499-9973
(805) 499-1523 (fax)
www.pituitary.com
??ptna@pituitary.com
1,2,3,4,6,7,9

PITUITARY TUMORS

See also: Pituitary Disorders

Pituitary Tumor Support
Network of Canada
61 Markbrook Ln.
Etiboke, ONT CAN M9V 5E7
(416) 749-1997
1,2,3,4,6,8

PITYRIASIS RUBRA PILARIS
See: Ichthyosis

POLIO

Informed Parents Against PAPP
(Vaccine Associated Paralytic Polio)
PO Box 53212
Washington, DC 20009
(888) 363-8277
(703) 319-8277 (fax)
www.ipav.org
??NOVAPP@aol.com
2,3,7,8,9

International Polio Network
4207 Lindell Blvd., #110
Saint Louis, MO 63108-2915
(314) 534-0475
(314) 534-5070 (fax)
??gini_intl@msn.com
1,2,3,4,5,6,7

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

POLYPOSIS

See also: Cancer; Peutz-Jeghers
Syndrome

Familial Gastrointestinal
Cancer Registry
Mount Sinai Hospital
600 University Ave., Ste. 1157
Toronto, ON CAN M5G 1X5
(416) 586-8334
(416) 586-8644 (fax)
??tburke@mtsinai.on.ca
1,2,3,4,9; French materials

POLYRADICULONEUROPATHY

See: Guillain-Barre Syndrome

POMPE DISEASE

See: Glycogen Storage Diseases;
Muscular Dystrophy; Tay-Sachs Disease

PORPHYRIA

Metabolic Disorders American
Porphyria Foundation
PO BOX 22712
Houston, TX 77227
(713) 266-9617
(713) 871-1788
www.enterprise.het/2pf/
??porphyrus@juno.com
1,2,3,4,7,8,9

Metabolic Disorders Canadian
Porphyria Foundation
Box 1206
Neepawa, MB CAN R0J 1H0
(204) 476-2800
1,2,3,9; French materials

PORT WINE STAINS

See: Sturge-Weber Sydrome

POSTAXIAL ACROFACIAL
DYSOSTOSIS

See: Nager & Miller Syndromes

PRADER-WILLI SYNDROME

Ontario Prader-Willi
Syndrome Association
1920 Yonge St. c104
Toronto, ON CAN M4S 3B2
(800) 563-1123
(416) 481-8657 (voice/fax)
www3.sympatico.ca/prader-willi/
??prader-willi@sympatico.ca
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)
willi.inter.net
prader_willi.inter.net
??foundation@prader-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
www.alhenet.net/~pwsausa/
index.html
??pwsausa@aol.com
1,2,3, 4,5,6,7,8,9 English, Spanish
and French materials

PROGERIA

International Progeria Registry
c/o W. Ted Brown, MD, PhD
NY State Inst. for Basic Research
in Developmental Disabilities
1050 Forest Hill Rd.
Staten Island, NY 10314
(718) 494-5333
(718) 494-1026 (fax)
??wtbibr@aol.com
3,9

PROGRESSIVE HYPOERYTHEMIA

See: Anemia, Aplastic

PROGRESSIVE OSSEOUS
HETEROPLASIA

See: Connective Tissue Disorders

PROPINONYL-COA
CARBOXYLASE (PCC)

See: Deficiency Acidemia, Organic

PROPIONIC ACIDEMIA

See: Acidemia, Organic

PROTEUS SYNDROME

See: Neurofibromatosis

PROTOCOPROPORPHYRIA

See: Liver Disorders; Porphyria

PROTOPORPHYRIA

See: Liver Disorders; Porphyria

PRUNE BELLY SYNDROME

Prune Belly Syndrome Network
100 UCLA Medical Plaza, Ste. 690
Los Angeles, CA 90095
(310) 825-6865
(310) 794-9962 (fax)
3,4,9

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
(800) 832-3765
(303) 355-3866
(303) 355-3859
www.ttuhsc.edu
??derckd@ttuhsc.edu
1,2,3,4,6,9

PSORIASIS

Canadian Psoriasis Foundation
1306 Wellington St., Ste. 500A
Ottawa, ON CAN K1Y 3B2
(800) 265-0926 (Canada only)
(613) 728-4000
(613) 728-8913 (fax)
1,2,4,5,6,8; French materials

National Psoriasis Foundation
92nd Ave.
Portland, OR 97223
(503) 244-7404
(503) 245-0626 (fax)
www.psoriasis.org
??getinfo@npsusa.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

Purine Research Society
5424 Beech Ave.
Bethesda, MD 20814-1730
(301) 530-0354
(301) 564-9597
www.2.dgsys.com/~purine/
??purine@erols.cm
1,2,3,4,8

PURPURA HEMORRHAGICA

See: Purpura, Idiopathic
Thrombocytopenia (ITP)

PURPURA, IDIOPATHIC
THROMBOCYTOPENIA (ITP)

ITP Society
Children's Blood Foundation
333 E. 38th St.
New York, NY 10016-2745
(800) 487-7010
(212) 297-4340
(212) 297-4336 (fax)
www.ultranet.com/~itpsoc
1,2,3,4,7,8,9

PYRIMIDINE METABOLIC
DISORDERS

See: Purine Metabolic Disorders

PYROGLUTAMICACIDURIA

See: Acidemia, Organic

PYRROLORPHYRIA

See: Porphyria

PYRUVATE CARBOXYLASE
DEFICIENCY

See: Acidemia, Organic; Lactic
Acidosis; Leigh Disease

PYRUVATE DEHYDROGENASE
DEFICIENCY

See: Acidemia, Organic; Lactic
Acidosis; Leigh Disease

PYRUVATE DEHYDROGENASE
PHOSPHATASE

See: Lactic Acidosis; Leigh Disease

Q-T PROLONGATION

See: Long Q-T Syndrome

RAPP-HODGKINS SYNDROME

See: Cleft Palate; Craniofacial
Disorders; Deaf-Blind; Ectodermal
Dysplasias; Hearing Impairments;
Visual Impairments

RASMUSSEN ENCEPHALITIS

See: Rasmussen Syndrome

RASMUSSEN SYNDROME

See also: Epilepsy; Seizure Disorders

Rasmussen Syndrome
Support Group
c/o Al and Lynn Miller
8235 Lethbridge Rd.
Millersville, MD 21108
(410) 987-5221 (voice/fax)
www. medhlp.netusa.net/www/
rasm.htm
??rssnlynn@aol.com
1,2,3,5,6,9; Spanish/French/
Russian/Greek materials

RECKLINGHAUSEN DISEASE

See: Neurofibromatosis

REFLEX SYMPATHETIC
DYSTROPHY SYNDROME

Reflex Sympathetic Dystrophy
Syndrome Association
of America
116 Haddon Ave., Ste. D
Haddonfield, NJ 08033
(609) 795-8845 (voice/fax)
www.rsds.org
1,2,3,4,6,8,9

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) 258-3943 (fax)
www.members.aol.com/rrpf/rrpf.html
??mstern@pucc.princeton.edu
1,2,3,4,7,8,9

RETINITIS PIGMENTOSA (RP)

See also: Macular Diseases; Usher
Syndrome; Visual Impairments

The Foundation Fighting Blindness
Executive Plz. 1, Ste. 800
11350 McCormick Rd.
Hunt Valley, MD 21031
(888) 394-3937
(410) 771-9470 (fax)
www.blindness.org
1,2,3,4,5,6,8,9; young adult
program, retina donor program

Retinitis Pigmentosa
International
23241 Ventura Blvd.
Woodland Hills, CA 91364
(800) 344-4877
(818) 992-0500
(818) 992-3265 (fax)
www.rpinternational.org
??RPINT@pacbell.net
1,2,4,7,8,9; Spanish materials

RP Research Foundation
Fighting Blindness
c/o Sharon Cole or Margot Alward
36 Toronto St., Ste. 910
Toronto, ON CAN M5C 2CS
(800) 461-3331 (Canada only)
(416) 360-4200
(416) 360-0060
1,2,3,5,7,8; French materials

RETINOBLASTOMA

See also: Cancer; Visual Impairments

National Retinoblastoma
Parent Group
PO Box 317
Watertown, MA 02272
(800) 562-6265
1,2,3,4,6,9

RETINOCEREBRAL ANGIOMATOSIS

See: Von Hippel-Lindau Syndrome

RETINOPATHY OF
PREMATURITY (ROP) DH

See: Neonatal Illness/Prematurity;
Visual Impairments

Prevent Blindness in
Premature Babies
PO Box 44792
Madison, WI 53744-4792
2,3,4,9

RETT SYNDROME

International Rett
Syndrome Association
9121 Piscataway Rd., Ste. 2B
Clinton, MD 20735
(800) 818-7388
(301) 856-3334
(301) 856-3336 (fax)
www.paltech.com/irsa/irsa.htm
??irsa@paltech.com
1,2,3,4,6,7,8,9; Spanish/French/
Russian/German materials

Ontario Rett Syndrome Association
147 Westdale Rd.
Oakville, ON CAN L6L 4Z7
(905) 844-7673
1,2,3,4,5,6,7,8,9

REYE SYNDROME

See: Fatty Oxidation Disorder

RILEY-DAY SYNDROME

See: Familial Dysautonomia

RING CHROMOSOME 4

See: Chromosome Deletions; Wolf-Hirschhorn
Syndrome

RING CHROMOSOME 6

See: Chromosome 6 Disorders

RING CHROMOSOME 9

See: Chromosome Deletions;
Craniofacial Disorders

RING CHROMOSOME 15

See: Chromosome 15 Disorders;
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

ROBINOW SYNDROME

See also: Craniofacial Disorders;
Short Stature

Robinow Syndrome Foundation
c/o Karla M. Kruger
15955 Uplander St. NW
Andover, MN 55304-2501
(612) 434-1152
(612) 778-2331 (fax)
1,2,3

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
(785) 697-2984
(785) 697-2985 (fax)
www.tucson.com/rts
??lbaxter@ruraltel.net
1,2,3,9

RUSSELL SYNDROME

See: Russell-Silver Syndrome

RUSSELL-SILVER SYNDROME

See also: Growth Disorders; Short Stature

Russell-Silver Support Group
1327 Harlem Dr.
Oak Park, IL 60302
(800) 3-Magic-3 (362-4433)
(313) 586-8038
www.nettap.com/~magic
??lantana@awol.com
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 Impairments

SCID

See: Immune Disorders

SCLERODERMA

See also: Arthritis; Autoimmune Disorders

Scleroderma Federation
Peabody Office Bldg.
89 Newbury St.
Panvers, MA 01923
(800) 722-HOPE (4673)
(978) 750-4499
(978) 750-9902 (fax)
www.scleroderma.org
??sclerofed@aol.com
1,2,3,4,5,6,7,8,9

Scleroderma Research
Foundation
PO Box 200
Columbus, NJ 08022
(800) 637-4005
(609) 723-7400
(609) 723-6700 (fax)
1,2,4

United Scleroderma Foundation, Inc.
89 Newbury St.
Peabody, MA 01960
(978) 750-4499
(978) 535-6696 (fax)
www.scleroderma.com
??sclerofed@aol.com
1,2,4,5,6,7,8,9

SCOLIOSIS

National Scoliosis Foundation
5 Cabot Place
Stoughton, MA 02072
(781) 341-6333
(617) 341-8333
www.scoliosis.org
??scoliosis@aol.com
1,2,3,4,5,6,7

SECKEL SYNDROME

See: Craniofacial Disorders;
Growth Disorders

SEIZURE DISORDERS

See also: Aicardi Syndrome; Epilepsy

THRESHOLD--Intractable
Seizure Disorder Support Group
& Newsletter
2150 Highway 35, Ste. 207C
Sea Girt, NJ 08750
www.efnj.com
??fnj@aol.com
1

SENSORY MOTOR
NEUROPATHY, HEREDITARY

See: Charcot-Marie-Tooth Disease

SENSORY NEUROPATHY WITH
ANHIDROSIS, CONGENITAL

See: Familial Dysautonomia

SEPTO-OPTIC DYSPLASIA

See also: Pituitary Disorders;
Visual Impairments

FOCUS: For Our Children's
Unique Sight
2571 Pico Pl.
San Diego, CA 92109
(619) 273-1473 (voice/fax)
www.telepath.com/canance/focus/
??daphari@adnc.com
1,2,3,9

SERUM PROTEASE
INHIBITOR DEFICIENCY

See: Alpha-1-Antitrypsin (AAT) Deficiency

SEVERE COMBINED
IMMUNODEFICIENCY (SCID)

See: Immune Disorders

SEX CHROMOSOME
DISORDERS, FEMALE

See: Turner Syndrome

SEX CHROMOSOME
DISORDERS, MALE

See: Klinefelter Syndrome

SHORT STATURE

See also: Dwarfism; Growth Disorders

Little People of America
PO Box 745
Lubbock, TX 79408
(888) 572-2001
www.Ipaonline.org
1,2,3,5,6; Spanish materials

LPBC: A Society for Short
Stature Awareness
Box 4280
Vancouver, BC CAN V6B 3Z7
(604) 688-4757
??mmrlpbc@bc.sympatico.ca
1,2,3,4,6

SHPRINTZEN SYNDROME

See: DiGeorge Syndrome; Velo-Cardio-Facial
Syndrome

SHWACHMAN SYNDROME

See also: Growth Disorders

Shwachman Syndrome
Support Services
c/o Joan Mowery
4118 Quincy St
St. Louis, MO 63116
(314)352-1821 phone/fax
www.xmission.com/~4sskids
??jmowery@mo.net
1,2,3, 4, 7,9; French/Italian/
Dutch materials

SHWACHMAN-DIAMOND
SYNDROME

See: Shwachman Syndrome

SIALIDOSIS

See: Mucopolysaccharidosis; Tay-Sachs
Disease

SIALOLIPIDOSIS

See: Mucolipidosis Type IV

SICKLE CELL ANEMIA

See: Sickle Cell Disease

SICKLE CELL DISEASE

Sickle Cell Disease Association
of America
200 Corporate Pointe, Ste. 495
Culver City, CA 90203-7633
(800) 421-8453
(310) 216-6363
(310) 215-3722 (fax)
1,2,3,4,5,6,8,9

Sickle Cell Disease Association
of the Piedmont
1102 E. Market St.
Greensboro, NC 27401-0964
(800) 733-8297
(336) 274-1507
(336) 275-7984 (fax)
??scdap@aol.com
1,2,3,4,7

Sickle Cell Society
6999 Cote Des Neiges, Ste 33
Montreal, PQ CAN H3S 2B8
(514) 735-5109
(514) 735-5100 (fax)
2,3,4,8,9; French materials

SIDS

See: Sudden Infant Death
Syndrome (SIDS)

SILVER SYNDROME

See: Russell-Silver Syndrome

SILVER-RUSSELL SYNDROME

See: Russell-Silver Syndrome

SIMPSON-GOLABI-BEHMEL
SYNDROME

See: Beckwith-Wiedermann Syndrome

SKELETAL ANOMALIES

See: Ectodermal Dysplasias

SKELETAL DYSPLASIA

See: Dwarfism; Growth Disorders;
Short Stature

SLEEP APNEA

See: Apnea, Sleep

SLO SYNDROME

See: Smith-Lemli-Opitz Syndrome

SLY SYNDROME

See: Mucopolysaccharidosis; Tay-Sachs
Disease

SMITH-LEMLI-OPITZ SYNDROME

See also: Craniofacial Disorders

Smith-Lemli-Opitz Advocacy
& Exchange
32 Ivy Ln.
Glen Mills, PA 19342
(610)361-9663
www.members.aol.com/slo97/
index.htm
1,2,3,6,9

SMITH-MAGENIS SYNDROME

PRISMS: Parents & Researchers
Interested in Smith-Magenis
Syndrome
11875 Fawn Ridge Ln.
Reston, VA 20194
(703) 709-0568
??acmsmith@nchgr.nih.gov
1,2,3,4,6,9

SOTOS SYNDROME

See also: Cerebral Palsy, Growth
Disorders, Neurofibromatosis.

Sotos Syndrome USA
Support Association
Three Danada Sq. E., #235
Wheaton, IL 60187
(888) 246-SSSA
(630) 682-8815 (international)
www.well.com/user/sssa/
??sssa@well.com
1,2,3,6

SOUQUES-CHARCOT SYNDROME
See: Progeria

SOUTH AFRICAN
GENETIC PORPHYRIA

See: Liver Disorders; Porphyria

SPASMODIC DYSPHONIA

See: Dystonia

SPASMODIC TORTICOLLIS

See: Dystonia

SPASMODIC WRYNECK

See: Dystonia

SPASTIC PARAPLEGIA, FAMILIAR

See: Ataxia

SPEECH DISORDERS

See: Aphasia; Apraxia; Stuttering

SPHINGOMYELIN LIPIDOSIS

See: Niemann-Pick Disease

SPIELMEYER-VOGT DISEASE

See: Batten Disease

SPIELMEYER-VOGT-BATTEN
SYNDROME

See: Batten Disease

SPINA BIFIDA

See also: Arnold-Chiari Malformation;
Hydrocephalus; Incontinence;
Latex Allergy

Spina Bifida Association
of America
4590 MacArthur Blvd. NW, Ste. 250
Washington, DC 20007-4226
(800) 621-3141
(202) 944-3285
(202) 944-3295 (fax)
www.sbaa.org
??sbaa@abaa.org
1,2, 4,5,6,8; Spanish materials,
scholarship program

Spina Bifida Association
of Canada
220-388 Donald St.
Winnipeg, MB CAN R3B 2J4
(800) 565-9488 (CAN only)
(204) 925-3650
(204) 925-3654 (fax)
??spinab@mts.net
1,2,4,5,6,7,8; French materials

SPINAL CORD INJURIES

See also: Ventilator Use

American Paralysis Association
500 Morris Ave.
Springfield, NJ 07081
(800) 225-0292
(973) 379-2690
(973) 912-9433 (fax)
www.apa/paralysis
??paralysis@aol.com
1,2,8

National Spinal Cord
Injury Association
8300 Colesville Rd., Ste. 551
Silver Spring, MD 20910
(800) 962-9629 (hotline only)
(301) 588-6959
(301) 588-9414 (fax)
www.trader.com/users/5010/1020
/nscia.html
??NSCIA2@aol.com
1,2,3,4,5,8; Spanish materials

National Spinal Cord
Injury Hotline
2200 Kernon Dr.
Baltimore, MD 21207
(800) 526-3456
(410) 448-6623 (local)
(410) 488-6627 (fax)
??scihotline@aol.com
2,3,4

SPINAL MUSCULAR ATROPHY

See also: Muscular Dystrophy;
Ventilator Use

Families of SMA
PO Box 196
Libertyville, IL 60048-0196
(800) 886-1762
(847) 367-7620
(847) 367-7623 (fax)
www.abacus96.com/fsma/
??sma@interaccess.com
1,2,3,4,5,6,7,8,9;
Spanish materials

SPINOCEREBELLAR ATAXIA

See: Ataxia; Friedreich Ataxia

SPLENIC ANEMIA, FAMILIAL

See: Gaucher Disease

SPONDYLOEPIPHYSEAL
DYSPLASIA CONGENITA

See: Cleft Palate; Growth Disorders;
Visual Impairments

SPONDYLOEPIPHYSEAL
DYSPLASIA TARDA

See: Growth Disorders

SSPE

See: Subacute Sclerosing Panencephalitis

STAR PROTEIN DEFICIENCY

See: Adrenal Hyperplasia, Congenital

STEELY HAIR DISEASE

See: Menkes Disease

STENGEL SYNDROME

See: Batten Disease

STENGEL-BATTEN-MAYOU-SPIELMEYER-VOGT
DISEASE

See: Batten Disease

STROKE

Heart and Stroke Foundation
of Canada
222 Queens St., Ste. 1402
Ottawa, ON CAN K1P 5V9
(613) 569-4361
(613) 241-3278 (fax)

National Stroke Association
96 Inverness Dr. E., Ste. 1
Englewood, CO 80112-5112
(800) 787-6537
(303) 649-9299
(303) 649-1328 (fax)
www.stroke.org
??info@stroke.org
1,2;5,6,7,8; Spanish/French materials

STURGE-KALISCHER-WEBER SYNDROME

See: Sturge-Weber Syndrome

STURGE-WEBER SYNDROME

See: Craniofacial Disorders; Epilepsy;
Glaucoma; Klippel-Trenaunay
Syndrome; Nevi, Giant Congenital;
Neurofibramatosis; Tuberous
Sclerosis; Vascular Ma/formations;
Von Hippel-Lindau Syndrome

Sturge-Weber Foundation
PO Box 418
Mount Freedom, NJ 07970
(800) 627-5482
(201) 895-4445
(201) 895-4846 (fax)
www.inforamp.net/~crs0590/
mission.html
??swf@pobox.com
1,2,3,4,6,7,8,9

Sturge-Weber Foundation
(Canada) Inc.
1960 Prairie Ave.
Port Coquitlam, BC CAN V3B 1V4
(604) 942-9209
(604) 942-6429 (fax)
www.inforamp.net/~cvs0590
??kmoore@axionet.com
1,2,3,4,6,7,8,9

STURGE-WEBER-DIMITRI SYNDROME

See: Sturge-Weber Syndrome

STUTTERING

National Center for Stuttering
200 E. 33rd St.
New York, NY 10016
(800) 221-2483
(212) 683-1372 (fax)
www.stuttering.com
??executivedirector@stuttering.com
2,4,5; Spanish materials

Speak Easy
c/o Mike Hughes
95 Evergreen Ave.
St. John, NB CAN E2N 1H4
(506) 696-6799 (voice/fax)
www.mi.net/poley/speakezy.htm
??speakez@nbnwt.nb.ca
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)
www.stuttersfa.org
??stuttersfa@aol.com
1,2,4; Spanish materials

SUBACUTE NECROTIZING
ENCEPHALOPATHY

See: Leigh Disease;
Mitocondrial Disorders

SUBACUTE SCLEROSING
PANENCEPHALITIS

See also: Epilepsy; Visual Impairment

National Subacute Sclerosing
Panencephalitis Registry
c/o Paul Dyken, Director
Institute of Research in Childhood
Neurodegenerative Disorders
PO Box 70191
Mobile, AL 36610-0191
(334) 478-6424
(334) 476-8277 (fax)
??pdyken@awol.com
2,6,9

SUCCINYLCHOLINE SENSITIVITY

See: Malignant Hyperthermia

SUDDEN INFANT DEATH
SYNDROME (SIDS)

See also: Bereavement Support

Canadian Foundation for the
Study of Infant Deaths
586 Eglinton Ave. E., Ste. 308
Toronto, ON CA M4P1P2
(800) 363-7437
(416) 488-3260
(416) 488-3864 (fax)
www.sidscanada.org/sids
??sidscanada@inforamp.net
1,2,3,4,5,6,8; French/
Spanish materials

National Sudden Infant Death
Syndrome Resource Center
8201 Greensboro Dr., Ste. 600
McLean, VA 22102
(703) 821-8955
(703) 821-2098 (fax)
www.ichp.ufl.edu/mch_netlink/
sids/sids1.htm
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

See also: Arnold-Chiari Malformation

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)
www.dataprompt.com/syringo
??102563.3507@compuserve.com
1,2,3,6,9

SYSTEMIC ELASTORRHEXIS
OF TOURAINE

See: Pseudoxanthoma Elasticum (PXE)

SYSTEMIC MAST CELL DISEASE

See: Mastocytosis

TANGIER DISEASE

See: Tay-Sachs Disease

TARGET CELL ANEMIA

See: Cooley Anemia

TARUI DISEASE

See: Glycogen Storage Diseases;
Muscular Dystroph

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
(617) 277-4463
(617) 277-0134 (fax)
www.mcrcr2.med.nyu.edu/murph
01/taysachs.htm
??ntsad_boston@worldnet.att.net
1,2,3,4,5,6,7,6,9; Russian
materials

TEF

See: VATERL 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
??tarsa@aol.com
1,2,3,4,9

THYROID DISORDERS

Hypoparathyroidism Thyroid
Foundation of America
Ruth Sleeper Hall, RSL 350
40 Parkman St.
Boston, MA 02114-2698
(800) 832-8321
(617) 726-8500
(617) 726-4136 (fax)
www.ffawev.org/pub/tfa
??tfa@clark.net
1,2,4,5,7

Hypoparathyroidism Thyroid
Foundation of Canada
1040 Gardeners Rd., Ste. C
Kingston, ON CAN K7P 1R7
(613) 634-3426
(613) 634-3483 (fax)
www.home.ican.net/-!thyroid.
Canada.html
??thyroid@limestone.kosone.com
1,2,5,6,8

TOOTH AND NAIL SYNDROME

See: Ectodermal Dysplasias

TORSION DYSTONIA, IDIOPATHIC

See: Dystonia

TOURETTE SYNDROME

See also: Attention Deficit Disorder;
Obsessive-Compulsive Disorder

Tourette Syndrome Association
42-40 Bell Blvd.
Bayside, NY 11361-2820
(718) 224-2999
(718) 279-9596 (fax)
neuro.www2.mgh.harvard.edu/tsa
/tsamain.nclk
??tourette@ix.netcom.com
1,2,4,5,6,7,8,9; Spanish materials

Tourette Syndrome Foundation
of Canada
194 Jarvis St., Ste. 206
Toronto, ON CAN M5B 2B7
(800) 361-3120 (Canada only)
(416) 861-8398
(416) 861-2472 (fax)
www.tourette.ca
??tffc.org@sympatico.ca
1,2,3,4,5,6,7,8,9; French materials

TOXIC PARALYTIC ANEMIA

See: Anemia, Aplastic

TOXOCARIASIS

National Toxicariasis Foundation
Project Mustard Seed
815 Hillboro Rd.
Edwardsville. IL 62025
(618) 659-1212
(618) 656-3965
??lmsjursen@hotmail.com
1,2,3,4,5,6,7,8,9

TRACHEOESOPHAGEAL
FISTULA (TEF)

See: VATERL Association

TREACHER COLLINS SYNDROME

See also: Craniofacial Disorders;
Hearing Impairments

Treacher Collins Foundation
PO Box 683
Norwich, VT 05055
(800) 823-2055
(802) 649-3050
1,2,3,4,6

TREMOR

International Tremor Foundation
7046 W. 105th St.
Overland Park, KS 60607
(913) 341-3880
(913) 341-1296 (fax)
??inttremorfnd@worldnet.att.net
1,2,3,4,5,8,9

TRICHODENTOOSSEOUS
SYNDROME; TYPES I, II & III

See: Ectodermal Dysplasias

TRICHODYSPLASIA-ONYCHOGRYPOSIS-HYPOHIDROSIS-CATARACT

See: Ectodermal Dysplasias

TRICHOFACIOHYPOHIDROTIC
SYNDROME

See: Ectodermal Dysplasias

TRICHONYCHODENTAL DYSPLASIA

See: Ectodermal Dysplasias

TRICHONYCHODYSPLASIA
WITH XERODERMA

See: Ectodermal Dysplasias

TRICHOOCULODERMOVERTEBR
AL SYNDROME

See: Ectodermal Dysplasias

TRICHOODONTOONYCHIAL
DYSPLASIA

See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-HYPOHIDROTIC DYSPLASIA
WITH CATARACT

See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-DERMAL SYNDROME

See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-DYSPLASIA
WITH PILI TORTI

See: Ectodermal Dysplasias

TRICHOPOLIODYSTROPHY

See: Menkes Disease

TRICHORHINOPRA-LANGEAL
SYNDROME (TRPS), TYPE 1

See: Ectodermal Dysplasias

TRICHOTILLOMANIA

See: Obsessive-Compulsive Disorder

TRIPHALANGEAL THUMBS-ONYCHODYSTROPHY-DEAFNESS

See: Ectodermal Dysplasias;
Hearing Impairments

TRP SYNDROME, TYPE I

See: Ectodermal Dysplasias

TRPS SYNDROME, TYPE II

See: Langer Gideon Syndrome

TUBEROUS SCLEROSIS

See also: Autism; Epilepsy;
Learning Disabilities

National Tuberous
Sclerosis Association
8181 Professional Pl., Ste. 110
Landover, MD 20785-2226
(800) 225-6872
(301) 459-9888
(301) 459-0394 (fax)
www.ntsa.org
??ntsa@ntsa.org
1,2,3,4,8,9

Tuberous Sclerosis Canada
Sclerose Tubereuse
2443 New Wood Dr.
Oakville, ON CA L6H 5Y3
(800) 347-0252
(905) 257-1997
www.sky.net/~adamse/
tuberous.htm
??jillian.dasilva@ablelink.org
1,2,3, 4, 7,8,9; lending library
(books, videos)

TURCOT SYNDROME

See: Brain Tumors; Cancer

TURNER SYNDROME

See also: Growth Disorders

Turner's 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
1,2,3,4,5,6, French Materials

Turner's Syndrome Society
of the US
1313 SE 5th St., Ste. 327
Minneapolis, MN 55414
(800) 365-9944
(612) 379-3607
(612) 379-3619 (fax)
www.turner-syndrome-us.org
??Lampim@aol.com
1,2,3,5,6,9; Spanish materials

TWIN-RELATED DISEASES

Conjoined Twins International
PO Box 10895
Prescott, AZ 86304-0895
??jmsjr@northlink.com

Twin Hope
2592 W. 14th St.
Cleveland, OH 44113
(216) 228-8887
www.twinhope.com
??twinhope@mail.ohio.net
1,2,3,4,5,7,8,9

TWIN TO TWIN
TRANSFUSION SYNDROME

See also: Twin-Related Diseases

Twin to Twin Transfusion
Syndrome Foundation
411 Longbeach Pkwy.
Bay Village, OH 44140
(440) 899-8887
(440) 401-8887 (urgent calls only)
(440) 899-1184 (fax)
www.tttsfoundation.org
??ttsfound@aol.com
1,2,3,4,5,7,6,9

TYROSINEMIA, HEREDITARY,
HEPATORENAL TYPE

See: Tyrosinemia I

TYROSINEMIA I

See also: Kidney Disorders;
Liver Disorders

Groupe Aide aux Enfants
Tyrosinemiques du Quebec
3162 rue Granville
Jonquiere, QC CAN G7S 2B9
(418) 548-1580
??gerard.tremlay@sympatico.ca
1,2, 4,5,9; French materials

TYROSYLURIA

See: Tyrosinemia I

UREA CYCLE DISORDERS

See: Metabolic Disorders

National Urea Cycle
Disorders Foundation
4841 Hill St.
La Canada, CA 91011
(800) 386-8233
www.nucdf.org
1,2,3,4,6,7,8,9

UROLOGIC DISORDERS

See: Incontinence; Kidney Diseases,
Hereditary; Kidney Disorders

UROSTOMY

See: Ostomy

URTICARIA PIGMENTOSA

See: Mastocytosis

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/TTY)
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
1,2,3,7,8,9

VAN MEERKEREN I SYNDROME

See: Ehlers-Danlos Syndrome

VASCULAR MALFORMATIONS

See also: Arteriovenous
Malformations (AVMs); Hemangioma;
Hemorrhagic Telangiectasis,
Hereditary; Klippel- Trenaunay
Syndrome; Lymphatic Malformations;
Moyamoya Disease; Nevi, Giant
Congenital; Sturge-Weber Syndrome;
Von Hippel-Lindau Syndrome

National Vascular
Malformations Foundation
8320 Nightingale
Dearborn Heights, MI 48127
(313) 274-1243
(313) 274-1393 (fax)
1,2,3,4,6

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
Parent Support Group
110-45 Queens Blvd.
Forest Hills, NY 11375-5501
(718) 261-8049
(718) 261-7346 (fax)
2,3,4,9

VENOUS MALFORMATIONS

See: Vascular Malformations

VENTILATOR USE

Citizens for Independence in
Living & Breathing
78 Golfwood Hights
Toronto, ON CAN M9P 3M2
(416) 244-2248 (voice/fax)
2,3,4,6,7,9

International Ventilator
Users Networks
4207 Lindell Blvd., #110
St Louis, MO 63108-2915
(314) 534-0475
(314) 534-5070 (fax)
??gini_intl@msn.com
??jfisc48232@aol.com
1,2,3,4,6,7,9

VENTRICULAR DEFECTS

See: Heart Disorders

VERMIS CEREBELLAR AGENESIS

See: Joubert Syndrome

VESTIBULAR DISORDERS

See also: Balance Disorders & Dizziness

Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
(800) 837-8428
(503) 229-8604 (fax)
www.vestibular.org
??veda@teleport.org
1,2,3,4,5; Spanish materials

VISUAL IMPAIRMENT/
HEARING IMPAIRMENT

See: Deaf-Blind

VISUAL IMPAIRMENT

See also: Albinism; Glaucoma;
Macular Diseases; Retinitis
Pigmentosa; Retinoblastoma;
Retinopathy of Prematurity; Septo-Optic
Dysplasia; Usher Syndrome

American Council of the Blind
1155 15th St. NW, Ste. 720
Washington, DC 20005
(800) 424-8666 (3-5:30 p.m. EST)
(202) 467-5081
(202) 467-5085 (fax)
www.acb.org
??ncrabb@access.digex.net
1,2,4,5,6,7

American Foundation for
the Blind
11 Penn Plz., Ste. 300
New York, NY 10001
(800) 232-5463
(212) 502-7600
(212) 502-7662 (TTY)
www.afb.org/afb
??afbinfo@afb.org
1,2,4,5,8

Blind Childrens Center
4120 Marathon St.
Los Angeles, CA 90029
(800) 222-3566
(800) 222-3567 (CA only)
(213) 664-2153
(213) 665-3828 (fax)
www.blindcntr.org/bcc
??info@blindcntr.org
1,2,3,4,81 Spanish materials

Blind Childrens Fund
4740 Okemos Rd.
Okemos, MI 48864
(517) 347-1357
(517) 347-1459 (fax)
www.blindchildrensfund.org
??blindschildrensfund@aol.com

Blind Children's Fund
Resource Center
2971 53rd St. SE
Auburn, WA 98092
(206) 735-6350 (voice/fax)
??blindchildrensfund@charitiesusa.com
1,2,4,6

Braille Institute of America
741 N. Vermont Ave.
Los Angeles, CA 90029
(213) 663-1111
www.brailleinstitute.org
??julief@braileinstitute.org

Canadian National Institute for
the Blind
1929 Bayview Ave.
Toronto, ON CAN M4G 3E8
(416) 486-2500
(416) 480-7417 (TTY)
(416) 480-7699 (fax)
??marjerb@east.cnib.ca
1,2,3,4,6,7,8; French materials

Council of Citizens with Low
Vision International
6511 26th St. W.
Bradenton, FL 34207
(800) 317-2258
(941) 755-3846
1,2,3,4,7,8

Council of Families with
Vision Impairment
6212 W. Franklin St.
Richmond, VA 23226
(804) 288-0395
1,2,3,4,6,7

The Lighthouse National Center
for Vision and Child Development
111 E. 59th St.
New York, NY 10022
(800) 829-0500
(212) 821-9200
(212) 821-9713 (TTY)
(212) 821-9705 (fax)
??mbeck@lighthouse.org
1,2,4,71 Spanish materials

National Association for Parents
of the Visually Impaired
PO Box 317
Watertown, MA 02471
(800) 562-6265
(617) 972-7441
(617) 972-7444 (fax)
www.spedex.com/napvi
1,2,3,5,7; Spanish materials

National Association for
Visually Handicapped
22 W 21st St., 6th Fl.
New York, NY 10010
(212) 889-3141
(212) 727-2931 (fax)
www.navh.org
??staff@navh.org
1,2,4,71 Spanish materials, large-print
lending library

National Braille Press
88 St. Stephen St.
Boston, MA 02115
(617) 266-6160
(617) 437-0456 (fax)
(800) 548-7323
www.npb.org
??orders@nbp.org
2

National Organization
of Parents of Blind Children
1800 Johnson St.
Baltimore, MD 21230
(410) 659-9314
(612) 696-1975 (BBS)
(410) 685-5653 (fax)
www.nfb.org
??nfb@access.digex.net
1,2,3,4,5,6,7

Prevent Blindness America
500 E. Remington Rd.
Schaumburg, IL 60173-4557
(800) 331-2020
(847) 843-2020
(847) 843-8458 (fax)
www.prevent_blindness.org
??74777.100@compuserve.com
1,2,5,6, 7,8; Spanish materials

Recording for the Blind
& Dyslexic
20 Roszel Rd.
Princeton, NJ 08540
(609) 520-8079
(609) 520-7990 (fax
www.rfbd.org
??info2rfbd.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)
www.netdirect.net/vision-enhancement/
??patprice@aol.com
1,2,4

VITAMIN B12 METABOLISM;
INBORN ERROR OF

See: Cobalamin (B12) Defiency

VITILIGO

National Vitiligo Foundation
100 Independence Pl., Ste. 200
Tyler, TX 75703
(903) 534-2925
(903) 534-8075 (fax)
www.nvfi.org
??73071.33@compuserve.com
1,2,5,6, Spanish materials

The Canadian Vitiligo Society
Dr. Danuta Pawlowski
Western General Hospital
8th FI., Rm. 542
399 Bathurst St.
Toronto, ON CAN M5T 2S8
(416) 603-5721

VOGT CEPHALODACTYLY

See: Apert Syndrome

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) 232-5946
(617) 734-8233
neurosurgery_mbh.harvard.edu/
vhl-fa/
??vhl@pipeline.com
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

WAGNER SYNDROME

See: Stickler Syndrome

WALBAUM-DEHEANE-SCHLEMMER
SYNDROME

See: Ectodermal Dysplasias

WALKER-WARBURG SYNDROME

See: Hydrocephalus; Lissencephaly

WARBURG SYNDROME

See: Hydrocephalus; Lissencephaly

WEAVER-SMITH SYNDROME

See: Weaver Syndrome

WEBER SYNDROME

See: Sturge-Weber Syndrome

WEGENER GRANULOMATOSIS

See also: Immune Disorders

Wegener's Granulomatosis
Support Group, Inc. (International)
PO Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
(816) 436-8211 (fax)
??wgsg@wgsg.org
www.wgsg.org
1,2,3,5,6,9

WERDING-HOFFMAN DISEASE

See: Spinal Muscular Atrophy

WERLHOF DISEASE

See: Purpura, Idiopathic
Thrombocytopenia (ITP)

WERMER SYNDROME

See: Multiple Endocrine Neoplasia I

WERNER SYNDROME

See: Progeria

WHISTLING FACE SYNDROME

See: Freeman-Sheldon Syndrome

WHISTLING FACE-WINDMILL
VEIN HAND SYNDROME

See: Freeman-Sheldon Syndrome

WHITE MATTER DISORDERS

See: Leukodystrophy

WHITE SPOT DISEASE

See: Vitiligo

WHITNALL-NORMAN SYNDROME

See: Norrie Disease

WILLIAMS SYNDROME

See also: Autism; Attention Deficit
Disorder; Growth Disorders; Heart
Disorders; Learning Disabilities;
Noonan Syndrome

Canadian Association for
Williams Syndrome
PO Box 2115
Vancouver, BC CAN V6B 3T5
(604) 852-2662
(604) 855-0032 (fax)
www.bmts.com/~williams/
??sev@uniserve.com
1,2,3,4,5,7,6,9

Williams Syndrome Association
PO Box 297
Clawson, MI 48017-0297
(241) 541-3630
(241) 541-3631 (fax)
members.aol.com/BobHazard/
wsc.html
??WSAoffice@aol.com
1,2,3,4,5,6,8,9; DNA research
bank, annual music camp

WILLIAMS-BEUREN SYNDROME

See: Williams Syndrome

WILMS TUMOR

See: Kidney Disorders

WISKOIT-ALDRICH SYNDROME
See: Immune Disorders; Purpura,
Immune Thrombocytopenia

WOLF SYNDROME

See: Wolf-Hirshhorn Syndrome

WOLF-HIRSCHHORN SYNDROME

4p- Parent Network
913 Herons Run Ln.
Woodbridge, VA 22191
(703) 497-2807
members.aol.com/Ibent503/whs
??tombecr@aol.com
1,2,3,6,9

Wolf-Hirschhorn Syndrome
Support Group and Newsletter
c/o Brenda Grimmett
5536 Virginia Ct.
Amherst, OH 44001
(440) 282-1460
members.aol.com/Ibent503/whs
??lbentely@orednet.org
1,2,3,6,9

X-LINKED COPPER DEFICIENCY

See: Menkes Disease

X-LINKED COPPER
MALABSORPTION

See: Menkes Disease

X-LINKED MYOTUBULAR
MYOPATHY

See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

XERODERMA PIGMENTOSUM

Canadian Organization of Rare
Disorders (CORD)
PO Box 814
Coaldale, AB CAN T1M 1M7
(403) 345-3948
(403) 345-4544
www.bulli.com/~cord
??cord@bulli.com
1,4,5,6

Easter Seals Society
1185 Eglington Ave., Ste. 800
Don Mills, ON CAN 3C 3P2
(416) 421-8377
(416)696-1035 (fax)
www.easterseals.org
??info@easterseals.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 National advocacy efforts

8 Fund research

9 Maintain research registry
COPYRIGHT 1999 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1999 Gale, Cengage Learning. All rights reserved.

Article Details
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Publication:The Exceptional Parent
Article Type:Directory
Date:Jan 1, 1999
Words:21175
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