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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 N0200D), 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, e-mail addresses and World Wide Web sites have been included. E-mail addresses are indicated by the symbol, ??. Web sites are listed with the standard http://before each. (Unless otherwise indicated, all telephone numbers are for voice only.)
1 -[Beta]-HYDROXYLASE
DEFICIENCY
See: Adrenal Disorders

17-20-DESMOLASE
DEFICIENCY
See: Adrenal Disorders

17-ALPHA-HYDROXYLASE DEFICIENCY
See: Adrenal Disorders

17-HYDROXYLASE DEFICIENCY
See: Adrenal Disorders

21-HYDROXYLASE DEFICIENCY
See: Adrenal Disorders

3-[Beta]-HYDROXYSTEROID
DEHYDROGENASE DEFICIENCY
See: Adrenal Disorders"

45, X SYNDROME
See: Turner's Syndrome;
Hypopigmentation

A-BETA-LIPOPROTEINEMIA
See: Tay-Sachs Disease

ABDOMINAL MIGRAINE
See: Cyclic Vomiting Syndrome

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
??tianrama@aol.com
http://www.members.aol.com/amda
page/index.htm

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 Ave. N.
Plymouth, MN 55446
(612) 559-1797
(612) 694-0017 (fax)
??oaanews@aol.com
http://www.oaanews.org
1,3,6,8,9

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)
??anausa@aol.com
http://www.anausa.org
1,2,4,6,8

Acoustic Neuroma Association
of Canada
PO Box 369
Edmonton, AB CAN T5J 2J6
(800) 561-2622 (V/TTY, Canada)
(780) 428-3384 (V/TTY)
??anac@compusmart.ab.ca
http://www.anac.ca
1,2,3, 4,5,6,7 French materials

ACQUIRED IMMUNE
DEFICIENCY SYNDROME
See: AIDS

ACROCEPHALOSYNDACTYLY,
TYPE I
See: Apert Syndrome

ACROFACIAL DYSOSTOSIS,
NAGER TYPE
See: Nager & Miller Syndromes

ACROMEGALY
See: Multiple Endocrine Neoplasia I;
Pituitary Tumors

ACTH DEFICIENCY
See: Adrenal Disorders

ACYL-COA DEHYDROGENASE
DEFICIENCY, MEDIUM-CHAIN
See: Fatty Oxidation Disorder

ADDISON DISEASE
See: Adrenal Disorders

ADIPOGENITAL-RETINITIS
PIGMENTOSA-POLYDACTYLY
SYNDROME
See: Laurence-Moon-Bardet-Biedl
Syndrome

ADRENAL CORTEX MALE
PSEUDOHERMAPHRODITISM
See: Adrenal Disorders

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

ADRENOCORTICOTROPIC
HORMONE DEFICIENCY
See: Adrenal Disorders; Pituitary
Tumors

ADRENOGENITAL SYNDROME
See: Adrenal Disorders

ADRENOLEUKODYSTROPHY
See: Leukodystrophy; Tay-Sachs
Disease

ADRENOLEUKODYSTROPHY,
NEONATAL
See: Leukodystrophy; Tay-Sachs
Disease

AGENESIS OF COMMISSURA
MAGNA CEREBRI
See: Agenesis of the Corpus
Callosum

AGENESIS OF THE CORPUS
CALLOSUM
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. ON 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)
??AICNews@aol.com
http://www.Aicardi.com
1,2,3,6,7,8,9

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)
??hivnet@ashastd.org
http://www.ashastd.org
2,5; Spanish materials

National Pediatric & Family HIV
Resource Center
30 Bergen St -ADMC- 4
Newark, NJ 07107
(800) 362-0071
(973) 972-0410
(973) 972-0399 (fax)
[??ortegaes@umdnj.edu
http://www.wdcnet.com/pedsaids
1,2,4,7; Spanish/Creole materials

ALAGILLE SYNDROME
See also: Heart Disorders; Liver
Disorders
Alagille Syndrome Alliance
10630 SW Garden Park PI
Tigard, OR 97223
(503) 639-6217
??hahn@worlnet.att.net
http://www.athenet.net/~luxhoj/mai
n.html
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
??noah@albinism.org
http://www.albinism.org/
1,2,3,4,5,6,8,9; Spanish materials

ALBRIGHT SYNDROME
See: Growth Disorders

ALGONEURODYSTROPHY
See: Reflex Sympathetic Dystrophy
Syndrome

ALLERGY
See: Asthma & Allergy; Food Allergy;
Latex Allergy

ALLERGY, FOOD
See: Food Allergy

ALLERGY, LATEX
See: Latex Allergy

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

ALOPECIA UNIVERSALAONYCHODYSTROPHY-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
Diseases

Alpha-1 National Association
8120 Penn Ave. South, Ste. 549
Minneapolis, MN 55431
(612) 703-9979
(612) 703-9977 (fax)
??brandley@alpha1.org
http://www.alpha1.org
1,2,3,4,5,6,7,9

ALPHA-GALACTOSIDASE
DEFICIENCY
See: Fabry Disease

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

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

Society for Alstrom Syndrome
Families
1006 Howard Rd
Warminster, PA 18974
(215) 674-1936
??sasf@voicenet.com
http://www.jax.org/alstrom
1,3,9

ALTERNATING HEMIPLEGIA
See: Hemiplegia, Alternating

AMELOCEREBROHYPHOHIDRO
TIC SYNDROME
See: Ectodermal Dysplasias

AMELOONYCHOHYPHOHIDROTIC
DYSPLASIA
See: Ectodermal Dysplasias

AMNIOTIC BANDS
See: Craniofacial Disorders

AMPUTATION
See also: Limb Disorders

American Amputee Foundation
PO Box 250218
Little Rock, AR 72225
(501) 666-2523
(501) 666-8367 (fax)
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
??ACAOne@aol.com
http://www.amputee-coalition.org.
1,2,3,4,5,6,9, 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 LANGE
See: Cornelia de Lange Syndrome

AMYLO-1, 6-GLUCOSIDASE
DEFICIENCY
See: Glycogen Storage Diseases;
Muscular Dystrophy

AMYLOPECTINOSIS
See: Glycogen Storage Diseases

AMYOPLASIA, CONGENITA
See: Arthrogryposis Multiplex
Congenita

ANAL ATRESIA
See: Anorectal Malformations

ANAL STENOSIS
See: Anorectal Malformations

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

ANDERSEN DISEASE
See: Glycogen Storage Diseases

ANDERSON-FABRY DISEASE
See: Fabry Disease

ANDERSON-WARBURG
SYNDROME
See: Norrie Disease

ANEMIA, APLASTIC
See: Anemia, Fanconi; Bone Marrow
Transplant

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

Aplastic Anemia Foundation of
America
PO Box 613
Annapolis, MD 21404-0613
(800) 747-2820
(410) 867-0240
??aafacenter@aol.com
http://www.aplastic.org
1,2,3,4,5,6,8,9; French/German/
Japanese/Spanish materials

ANEMIA, AREGENERATIVE
See: Anemia, Aplastic

ANEMIA, COOLEY
See: Cooley Anemia

ANEMIA, DIAMOND BLACKFAN
See also: Anemia Aplastic, Anemia
Fanconi, Autoimmune Disorders

Diamond Blackfan Anemia
Foundation, Inc.
20 Tracy Lynn Ln.
West Seneca, NY 14224
(716) 674-2818??dbafoundation@juno.com
1,2,3,4,6,7,8,9

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
(541) 687-4658
(541) 687-0548 (fax)
(800) 828-4891
??fafund@rio.com
1,2,6,8;
Spanish/Portugese/French
materials

ANEMIA, HEMOLYTIC
See: Cooley Anemia

ANEMIA, HYPOPLASTIC
See: Anemia, Aplastic

ANEMIA, MEDITERRANEAN
See: Cooley Anemia

ANEMIA, REFRACTORY
See: Anemia, Aplastic

ANEMIA, TARGET CELL
See: Cooley Anemia

ANEMIA, TOXIC PARALYTIC
See: Anemia, Aplastic

ANGELMAN SYNDROME
See also: Epilepsy

Angelman Syndrome Foundation
414 Plaza Dr., Ste. 209
Westmont, IL 60559-5507
(800) 432-6435
(630) 655-0391
??asf@adminsys.com
http://www.-chem.ucsd.edu/asf
1,2,3,4,5,6,7,8,9; Internet mail
list-subscribe by sending e-mail
to: listserv@ucsd.edu

Canadian Angelman Syndrome
Society
PO Box 37
Priddis, AB CAN, T0L 1WO
(403) 931-2415 (voice/fax)
??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: 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)
??pullthrunw@aol.com
http://www.pullthrough.org
1,2,3,4,9

APECED SYNDROME
See: Ectodermal Dysplasia;
Hypoparathyroidism

APERT SYNDROME
See also: Craniofacial Disorders

Apert Support and Information
Network
PO Box 1184
Fair Oaks, CA 5628
(916) 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
3,5,9

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 0010
(800) 922-4622
(212) 989-7777 (fax)
??klein@aphasia.org
http://www.aphasia.org
1,2,3,4,5

APLASTIC ANEMIA
See: Anemia, Aplastic

APNEA, INFANTILESee: Apnea, Sleep

APNEA, SLEEP
American Sleep Apnea
Association
1424 K Street NW Ste. 302
Washington, DC 20005
(202) 293-3656
??asaa@sleepapnea.org
http://sleepapnea.org
1,2,5,6,8

APRAXIA
See also: 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

ARGININOSUCCINASE
DEFICIENCY
See: Urea Cycle Disorders

ARGININOSUCCINIC ACID
SYNTHETASE DEFICIENCY
See: Urea Cycle Disorders

ARGININOSUCCINIC ACIDURIA
See: Urea Cycle Disorders

ARNOLD-CHIARI
MALFORMATION
See also: 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

ARTHRO-OPTHALMOPATHY
See: Stickler Syndrome

ARTHRITIS

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

Arthritis Society
#1700, 393 University Ave.
Toronto, ON CAN M5G 1E6
(800) 321-1433(CAN only)
(416) 979-7228
(416) 979-8366 (fax)
??nkent@arthritis.ca
http://www.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
??avenues@sonnet.com
http://www.sonnet.com/avenues
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 and Asthma Network
Mothers of Asthmatics, Inc.
2751 Prosperity Ave., Ste. 150
Fairfax, VA 22031-4397
(703) 641-9595
(703) 573-7794 (fax)
(800) 878-4403
??aanma@aol.com
http://www.aanma.org
1,2,4,5,6

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

Asthma and Allergy Foundation
of America
1233 20th Street, N.W. Ste. 402
Washington, DC 20036
(800) 727-8462
(202) 466-7643
(202) 466-8940 (fax)
??info@aafa.org
http://www.aafa.org
1,2,3,4,5,6,7,81 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 Fembrook Lane, Ste. 119
Minneapolis, MN 55447-4752
(612)553-0020
(612)553-0167 (fax)
??naf@mr.net
http://www.ataxia.org
1,2,3,4,5,6,7,81

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 Real, # 212
Boca Raton, FL 33432-5966
(800) 543-5728
(561) 395-2621
(561) 395-2640 (fax)
??betsy@atcp.org
??rosa@atcp.org
??bradmargus@atcp.org
http://www.atcp.org
1,2,3,4,6,7,9; Spanish materials

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

Learning Disabilities
AD-IN: Attention Deficit
Information Network
475 Hillside Ave.
Needham. MA 02494
(781) 455-9895
(781) 444-5466 (fax)
??adin@gis.net
http://www/.addinfonetwork.com
2,3,4,5,6,8

CHADD-Canada, Inc.-Children
and Adults with Attention
Deficit Disorder
1376 Bank Street, Ste. 214
Ottawa ON, Canada K1H 1B3
(301) 306-7070
(301) 306-7090 (fax)
??chaddcanad@hotmail.com
http://www.chadd.org
http://www.members.tripod.com/~c
haddcanada/index.html
1,2,3,5,6,91 Spanish materials

CHADD: Children and Adults
with Attention Deficit Disorders
8181 Professional Place, Suite 201
Landover, MD 20785
(800) 233-4050
(301) 306-7070
(301) 306-7090
??national@Chadd.org
http://www.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
http://www.add.org
??mail@add.org
1,2,4,6

AURICULO-OCULO-VERTEBRAL
SYNDROME
See: Goldenhar Syndrome

AUTISM
See also: Autism and Sensory
Impairments; Language Disorders

Autism Research Institute
4182 Adams Ave.
San Diego, CA 92116
(619) 281-7165
(619) 563-6840 (fax)
http://www.autism.com/autism
1,2,4,5,9

Autism Society of America
7910 Woodmont Ave. Ste. 650
Bethesda, MD
(800) 328-8476
(301) 657-0881
(301) 657-0869 (fax)
http://www.autism-society.org/
1,2,4,5,6,7,8;
Chinese/French/Spanish/Vietnam
ese 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 97302
(503) 363-9110 (voice/fax)
??sait@eleport.com
http://www.autism.org/
2,6

MAAP Services, Inc.
PO Box 524
Crown Point, IN 46307
(219) 662-1311
(219) 662-0638 (fax)
??chart@netnitco.net
http://ww2.netnitco.net/users/chart/
maap.htm
1,2,5,6

National Autism Hotline/Autism
Services Center
605 Ninth St Prichard Bldg.
PO Box 507
Huntington, WV 25710-0507
(304) 525-8014
(304) 525-8026 (fax)
2,3,5,7; Spanish/Italian/French
materials

AUTISM AND SENSORY
IMPAIRMENTS
See also: Hearing Impairments;
Visual Impairments

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

AUTOIMMUNE DISORDERS
See also: Immune Disorders; Vitiligo

American Autoimmune Related
Diseases Association
22100 Gratiot Ave.
East Detroit, MI 48021
(810) 776-3900
(800) 598-4668
??aarda@aol.com
http://www.aarda.org
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 (V/TTY)
(615) 329-7807
(615) 329-7935 (fax)
??ear@earfoundation.org
http://www.earfoundation.org
1,2

BANNAYAN, RUVALCABA,
RILEY-SMITH SYNDROME
See: Sotos Syndrome

BARDET-BIEDL SYNDROME
See: Laurence-Moon-Bardet-Biedl
Syndrome

BATTEN DISEASE
See also: Tay-Sachs Disease

Batten Disease Support and
Research Association
2600 Parsons Ave.
Columbus, OH 43207
(800) 448-4570
(740) 927-4298
??bdsra1@bdsra.com
http://www.bdsra.org
1,2,3,4,5,6,8,9;
Spanish/Portugese/German/Frec
nh materials

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

Children's Brain Diseases
Foundation
350 Parnassus Ave., Ste. 900
San Francisco, CA 94117
(415) 566-5402
(415) 565-6259
(415) 863-3452 (fax)
http://www.children'sneuronet.org
1,2,3,6,7,8

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

BBB SYNDROME
See: Opitz Syndrome

BBBG SYNDROME
See: Opitz Syndrome

BECKER MUSCULAR
DYSTROPHY
See: Muscular Dystrophy

BECKWITH-WIEDEMANN
SYNDROME
Beckwith-Wiedemann Support
Network
2711 Colony Rd
Ann Arbor, MI 48104
(800) 837-2976 (Parents only)
(734) 973-0263
(734) 973-9721 (fax)
??A800BWSN@aol.com
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 also: 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

BEREAVEMENT SUPPORT

Center for Loss in Multiple Birth
PO Box 1064
Palmer, AK 99645-1064
(907) 746-6123
??climb@pobox.alaska.net
http://www.climb-support.org
1,2,3,5,6

The Compassionate Friends, Inc,
(Offering support to families who have
experienced the death of a child.)
PO Box 3696
Oak Brook, IL 60522-3696
(630) 990-0010
(630) 990-0246 (fax)
??tcf_national@prodigy.com
http://www.compassionatefriends.org
1,2,3,4,5,6; Spanish materials

Pen-Parents
PO Box 8738
Reno, NV89507-8738
(702) 826-7332
(702) 826-0632 fax)
??PenParents@prodigy.com
http://www.pages.prodigy.com/nv/fg
ck08a/penparents.html
1,2,3,4

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

BERGER DISEASE
See: Kidney Disorders

BETA THALASSEMIA MAJOR
See: Cooley Anemia

BEUREN SYNDROME
See: Williams Syndrome

BIOTINIDASE DEFICIENCY
See: Metabolic Disorders

BIRTHMARK
See: Nevi, Giant Congenital; Vascular
Ma/formations

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-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

Blood & Bone Marrow
Transplant Information Network
2900 Skokie Valley Rd., Ste B
Highland Park, IL 60035
(888) 597-7674
(847) 433-3313
(847) 433-4599 (fax)
??help@bmtnews.org
http://www.bmtnews.org
1,2,3,9; legal referral for
insurance problems

BONE TUMOR-EPIDERMOID
CYST-POLYPOSIS
See: Peutz-Jeghers Syndrome;
Polyposis

BONNEVIE-ULRICH SYNDROME
See: Turner Syndrome

BOOK SYNDROME
See: Ectodermal Dysplasias

BOURNEVILLE PRINGLE
SYNDROME
See: Tuberous Sclerosis

BOWEL DYSFUNCTION/
IRRITABLE BOWEL SYNDROME
See also: Gastrointestinal Disorders

International Foundation for
Functional Gastrointestinal
Disorders (IFFGD)
PO Box 17864
Milwaukee, WI 53217
(888)964-2001
(414) 964-1799
(414) 964-7176 (fax)
??IFFGD@iffgd.org
http://www.iffgd.org
1,2,4,5 (referrals to local
physicians),6,9; One-one
telephone support.

BRACHIAL PLEXUS INJURY
See: Erb Palsy

BRACHMANN-DE LANGE
SYNDROME
See: Cornelia de Lange Syndrome

BRAIN ATTACK
See: Stroke

BRAIN INJURY
See also: Aphasia, Acquired

Brain Injury Association
105 N. Alfred St.
Alexandria, VA 22314
(800) 444-6443 (family helpline)
(703) 236-6000
(703) 236-6001 (fax)
??familyhelpline@biaus.org
http://www.biausa.org
1,2,3,4,5,6,7,8; Spanish materials

BRAIN STEM
MALFORMATIONS
See: Arnold- Chiari Malformation;
Joubert Syndrome; Syringomyelia

BRAIN TUMORS
See also: Acoustic Neuroma; Brain
Injury; Cancer; Epilepsy; Pitutitary
Tumors; Von Hippel-Lindau Syndrome

American Brain Tumor
Association
2720 River Rd., Ste. 146
Des Plaines, IL 60018
(800) 886-2282
(847) 827-9910
(847) 827-9918 (fax)
??info@abta.org
http://www.abta.org
1,2,3,4,5,6,7 Spanish materials

Brain Tumor Foundation for
Children, INC
1835 Savoy Dr., Ste. 316
Atlanta, GA 30341
(770) 458-5554
(770) 458-5467 (fax)
??btfc@bellsouth.net
http://www.btfcgainc.org
1,2,3,4,5,6

Brain Tumor Foundation of
Canada
650 Waterloo St., Ste. 100
London, ON CAN N6B 2R4
(519) 642-7755
(519) 642-7192 (fax)
??eallman1@juno.com
http://www.btfc.org
1,2,3,4,6,8,9; French materials

Brain Tumor Society
124 Watertown St., Ste. 3-H
Watertown, MA 02134-1245
(800) 770-8287
(617) 924-9997
(617) 924-9998 (fax)
??info@tbts.org
http://www.tbts.org
1,2,3,6,7,8

Children's Brain Tumor
Foundation
274 Madison Ave Ste. 1301
New York, NY 10016
(212) 448-9494
(212) 448-1022 (fax)
http://www.childrensneuornet.org
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)
??nbtf@braintumor.org
http://www.braintumor.org
1,2,3,4,6,8

BRANCHED CHAIN KETONURIA
See: Maple Syrup Urine Disease

BRANCHER DEFICIENCY
See: Glycogen Storage Diseases

BRANCHIO-OTO-RENAL
SYNDROME
See: Craniofacial Disorders; Hearing
Impairments; Kidney Disorders

BRITTLE BONE DISEASE
See: Osteogenesis Imperfecta

BROAD THUMB-HALLUX
SYNDROME
See: Rubinstein- Taybi Syndrome

BURKE SYNDROME
See: Shwachman Syndrome

BURNS

Phoenix Society for Burn
Survivors
2153 Wealthy SouthEast, Ste. 215
East Grand Rapids, Michigan 49506
(800) 888-2876
(616) 458-2773
(616) 458-2831 (fax)
??Info@Phoenix-Society.org
http://www.phoenix-society.org
1,2,3,4,5,6,7,9

CALLOSAL AGENESIS
See: Agenesis of the Corpus
Callosum; Aicardi Syndrome

CAMARENA SYNDROME
See: Ectodermal Dysplasias

CAMPTOMELIC SYNDROME
See: Growth Disorders; Short Stature

CANAVAN DISEASE
See: Leukodystrophy; Tay-Sachs
Disease

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

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

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

Candlelighters Childhood
Cancer Foundation
7910 Woodmont Ave., Ste. 460
Bethesda, MD 20814
(800) 366-2223
(301) 718-2686 (fax)
??info@candlelighters.org
http://www.candlelighters.org
1,2,3,4,5, 7; Survivers of
Childhood Cancer program,
speakers bureau

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

CANCER; BRAIN
See: Brain Tumors

CANCER; GASTROINTESTINAL
See: Peutz-Jeghers Syndrome;
Polyposis

CARBAMYL PHOSPHATE
SYNTHETASE (CPS)
DEFICIENCY
See: Urea Cycle Disorders

CARDIAC DISORDERS
See: Heart Disorders

CARDIO-FACIO-CUTANEOUS
SYNDROME
See also: Heart Disorders; Ichthyosis

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

CAREY SYNDROME
See: Ectodermal Dysplasias

CARNITINE DEFICIENCY
SYNDROMES
See also: Acidemia, Organic; Fatty
Oxidation Disorder; Mitochondrial
Disorders; 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; Carnitine
Deficiency Syndromes; Muscular
Dystrophy

CARPENTER SYNDROME
See also: Craniofacial Disorders

Carpenter Syndrome Network
c/o Cathy Sponsler
P.O. Box 4215-48
20516 High Line Rd.
Tehachapi, CA 93561
(805) 823-0963
??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; Gluten
Intolerance

Canadian Celiac Association
190 Britannia Rd E Unit 11
Mississauga. ON CAN L4Z 1W6
(905) 507-6208
(905) 507-4673 (fax)
http://www.celiac.ca
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)
??cdf@celiac.org
http://www.celiac.org
1,2,3,9

CELIAC SPRUE
See also: Celiac Disease; Gluten
Intolerance

American Cedliac Society
IA 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
59 Cuptal Ave.
West Orange, NJ 07052
(973) 325-8837
(973) 669-8808 (fax)
??bentleac@umdnj.edu
1,2,3,4,5,6, 7,8; Speakers bureau.

Celiac Sprue Association
PO Box 31700
Omaha, NE 68131-0700
(402) 558-0600
(402) 558-1347 (fax)
??celiacs@csaceliacs.org
http://www.csacoliacs.org
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) 244-9686
(416) 244-6543 (fax)
??ofcp@ofcp.on.ca
http://www.ofcp.on.ca
1,2,3,4,5,6,9; French materials

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

CEREBROOCULORENAL
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)
??cmtassoc@aol.com
http://www.charcot-marie-tooth.org
1,2,4,5,7,6,8,9; Spanish materials

Charcot-Marie-Tooth
International
1 Springbank Dr.
St Catharines, ON CAN L2S 2K1
(905) 687-3630
(905) 687-8753 (fax)
??cmtint@vaxxine.com
http://www.cmtint.org
1,2,3,5, 7,9; Scholarship program
for members.

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

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

CHEDIAK HIGASHI SYNDROME
See: Hermansky-Pudlak Syndrome

CHEMKE SYNDROME
See: Hydrocephalus; Lissencephaly

CHIARI MALFORMATION
See: Arnold-Chiari Malformation

CHILD SYNDROME
See: Ichthyosis

CHOLESTATIS WITH
PERIPHERAL PULMONARY
STENOSIS
See: Alagille Syndrome

CHOLESTERYL ESTER
STORAGE DISEASE
See: Tay-Sachs Disease

CHONDRODYSPLASIA
PUNCTATA
See: Growth Disorders; Ichthyosis

CHORIONIC VILLUS SAMPLING,
RELATED DISABILITIES
See also: Limb Disorders

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

CHOROIDEREMIA
See: Macular Diseases; Retinitis
Pigmentosa; Visual Impairments

CHRIST-SIEMENS-TOURAINE
SYNDROME
See: Craniofacial Disorders;
Ectodermal Dysplasias

CHROMOSOME 13 & 18
DISORDERS
See also: Chromosome 18 Disorders

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

SOFT: Support Organization for
Trisomy 18,13 and Related
Disorders
2982 S Union St.
Rochester, NY14624
(800) 716-7638
(716) 594-4621 (voice/fax)
??barbsoft@aol.com
http://www.trisomy.org
1,2,3,5,6,9; also covers other
rare trisomy disorders

CHROMOSOME 4P-
See: Wolf-Hirschorn Syndrome

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)
??CODY@UTHSCSA.EDU
chr18.uthscsa.edu
1,3,4,6,8,9

CHROMOSOME 21 RING
See: Chromosome Deletions

CHROMOSOME 22 RING
See also: Chromosome Deletions

Chromosome 22 Central
232 Kent Ave.
Timmins, Ontario CAN P4N 3C3
(705)268-3099 (v/fax)
??mum2_1@hotmail.com
http://www.nt.net/~a815/chr22.htm
1,2,3,9: Covers all Chromosome 22-related
disorders.

CHROMOSOME 3, MONOSOMY
3P2
See: Chromosome Deletions

CHROMOSOME 4 RING
See; Chromosome Deletions; Wolf-Hirschhorn
Syndrome

CHROMOSOME 45,X
See: Turner Syndrome

CHROMOSOME 45,X/46,XX
See: Turner Syndrome

CHROMOSOME 46XY/47,XXY
See: Klinefelter Syndrome

CHROMOSOME 47,XXY
See: Klinefelter Syndrome

CHROMOSOME 47,XYY
See: Klinefelter Syndrome

CHROMOSOME 48,XXXY
See: Klinefelter Syndrome

CHROMOSOME 48,XXYY
See: Klinefelter Syndrome

CHROMOSOME 49,XXXXY
See: Klinefelter Syndrome

CHROMOSOME 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
(800) CD0-6880 (toll-free family
helpline)
(561) 391-5098
(561) 395-4252 (fax)
??cdo@worldnet.att.net
http://www.members.aol.com/cdous
a/cdo.htm
1,2,3,9; Also deals with
chromosome translocations

CHROMOSOME DISORDERS
See also: Chromosome 13 & 18
Disorders

Chromosome 22 Central
232 Kent Ave.
Timmin, ON CAN P4N 3C3
(705) 268-3099 (voice/fax)
??mum2_1@hotmail.com
http://www.nt.net/~a815/chr22.htm
1,2,3,9

CHROMOSOME INVERSIONS

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

CHROMOSOME
TRANSLOCATIONS
See: Chromosome Deletions

CHROMOSOME TRISOMY
DISORDERS
See: Chromosome 13 & 18 Disorders

CHRONIC ENCEPHALITIS &
EPILEPSY
See: Rasmussen Syndrome

CHRONIC FATIGUE SYNDROME

CFIDS Association of America
PO Box 220398
Charlotte, NC 28222-0398
(800) 442-3437
(704) 365-9755 (fax)
??info@cfids.org
http://www.cfids.org
1,2,4,6,8

CHRONIC INFLAMMATORY
DEMYELINATING
POLYNEUROPATHY
See: Autoimmune Disorders

CHRONIC INFLAMMATORY
DEMYELINATING
POLYRADICULONEUROPATHY
See: Guillain-Barre Syndrome

CHRONIC LOCALIZED
ENCEPHALITIS
See: Rasmussen Syndrome

CITRULLINEMIA
See: Urea Cycle Disorders

CLEFT PALATE
See also: Craniofacial Disorders

Cleft Palate Foundation
104 Estes Drive, Ste. 204
Chapel Hill, NC 27514
(800) 242-5338
(919)933-9044
(919)933-9604 (fax)
??cleftline@aol.com
http://www.cleft.com
2,4,5,6,7; Spanish materials

CMV, CONGENITAL
See: Cytomegalovirus (CMV),
Congenital

COBALAMIN (B12) DEFIENCY
See also: Metabolic Disorders

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

COCKAYNE SYNDROME
See also: Growth Disorders;
Xeroderma Pigmentosum

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

COFFIN-SIRIS' SYNDROME
See: Ectodermal Dysplasias

COFFIN-LOWRY SYNDROME

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

COGAN'S SYNDROME
See: Autoimmune Disorders

COLITIS
See: Crohn Disease & Colitis

COLOBOMA
See: Visual Impairments

COMPLEX REGIONAL PAIN
SYNDROME
See: Reflex Sympathetic Dystrophy
Syndrome

CONGENITAL ADRENAL
HYPERPLASIA (CAH)
See: Adrenal Disorders

CONGENITAL LIPOID
HYPERPLASIA
See: Adrenal Disorders

CONGENITAL SENSORY
NEUROPATHY WITH
ANHIDROSIS
See: Familial Dysautonomia

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

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

CONRADI-HUNERMANN
SYNDROME
See: Growth Disorders; Ichthyosis

COOLEY THALASSEMIA
MAJOR
See also: Autoimmune Disorders

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

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)
http://cdlsoutreach.org
??cdlsintl@iconn.net

CORPUS CALLOSUM DISORDERS
See: Agenesis of the Corpus
Callosum; Aicardi Syndrome

COX DEFICIENCY
See: Leigh Disease; Mitochondrial
Disorders

CRANIOCARPOTARSAL DYSTROPHY
See: Freeman-Sheldon Syndrome

CRANIOECTODERMAL SYNDROME
See: Ectodermal Dysplasias

CRANIOFACIAL DISORDERS

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

AboutFace USA
1407-1/2 N. wells
Chicago, IL 60610
(800) 665-FACE [3223]
(312) 337-0742
(312) 787-3136 (fax)
??AboutFace2000@aol.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)
http://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)
http://www.erlanger org/cranio
??dnkm90@prodigy.com
1,2,3,5,7

FACES--The National
Craniofacial Association
PO Box 11082
Chattanooga, TN 37401
(800) 332-2373
(423) 266-1632
(423) 267-3124 (fax)
??Faces@mindspring.com
http://www.faces-cranio.org
1,2,3,6,9; financial assistance for
medical-related travel

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

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

National Foundation for
Facial Reconstruction
317 E. 34th St., Rm. 901
New York, NY 10016
(212) 263-6656
(212) 263-7534 (fax)
??nffr@earthlink.net
http://www.nffr.org
2,3,4,8,9

CRANIOSYNOSTOSIS
See: Craniofacial Disorders

CRANIOSYNOSTOSIS
See: Craniofacial Disorders

CRI DU CHAT SYNDROME

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

CRIB DEATH

See: Sudden Infant Death
Syndrome (SIDS)

CRIGLER-NAJJAR
See: Liver Disease and Trasplant

CROHN DISEASE & COLITIS

CCFA: Crohn's & Colitis
Foundation of America
386 Park Ave. S., 17th FI.
New York, NY 10016-8804
(800) 932-2423
(212) 685-3440
(212) 779-4098 (fax)
http://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 1 L9
(800) 387-1479 (CAN only)
(416) 920-5035
(416) 929-0364 (fax)
http://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
3707 Cedar Hill Rd., NW
Canal Winchester, OH 43110
(614) 837-2586
(614) 837-6543 (fax)
??Drwaites@infinet.com
http://www.beaker.iupui.edu/cusa
1,2,3,4,5,6,8,9

CYSTIC FIBROSIS

Canadian Cystic Fibrosis Foundation
2221 Yonge St., Ste. 601
Toronto, ON CAN M4S 2B4
(800) 378-2233 (Canada only)
(416) 485-9149
(416) 485-0960 (fax)
??info@ccff.ca
http://www.ccff.ca/~cfwww/index.ht
ml
1,2,5,6,7,8,9; French, German,
Spainish, and Russian brochures
and booklets. Videos available in
French and English

Cystic Fibrosis Foundation
National Office
6931 Arlington Rd.
Bethesda, MD 20814
(800) 344-4823 (301) 951-4422
(301) 951-6378 (fax)
http://www.cff.org
1,2,3,4,5,6,7,8,9

CYSTINOSIS
See also: Kidney Disorders

Cystinosis Foundation
2516 Stockbridge Dr.
Oakland, CA 94611
(800) 392-8458
(510) 482-8119
http://www.cystinosisfoundation.ucs
d.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. 150
1102 Bates St.
Houston, TX 77030-2399
(713) 770-4387
(713) 770-4347 (fax)
http://www.4cmv.com
??cmv@bcm.tmc.edu
1,2,3,4

DANDY-WALKER SYNDROME
see also: Hydrocephalus

Dandy Walker Syndrome
Network
5030 142nd Path W
Apple Valley, MN 55124
(612) 423-4008
2,3,4

DARIER DISEASE
See: Ichthyosis

DE BARSEY SYNDROME
See: Connective Tissue Disorders

DE BARSEY-MOENSDIERCKS
SYNDROME
See: Connective Tissue Disorders

DE MORSIER SYNDROME
See: Septo-Optic Dysplasia

DEAF-BLIND
See also: Hearing Impairments;
Visual Impairments

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

National Family Association for
Deaf-Blind
111 Middle Neck Rd.
Sand Point, NY 11050-1129
(800) 255-0411, Ext. 275
(516) 944-8637 (TTY)
(516) 944-7302 (fax)
??hkncdir@aol.com
http://www.helenkeller.org.national
1,2,3,4,5,6; Newsletter available
by request in braille, on disk
(WP5.1) or large print.

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

DEAFNESS
See: Hearing Impairments

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 INSPIDUS
See also: Autoimmune Disorders

The Diabetes Insipidus
Foundation Inc.
4533 Ridge Dr.
Baltimore, MD 21229
(410) 247-3953
1,2

DIABETES MELLITUS
See also: Autoimmune Dosorderd;
Kidney Disorders

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

DIABETES MELLITUS
See also: Kidney Disorders

Canadian Diabetes Association
15 Toronto St., Ste. 800
Toronto, ON CAN M5C 2E3
(416) 363-3373
(416) 363-3393 (fax)
??info@diabetes.ca
1,2,4,6, 7,8; French Materials

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

DIGESTIVE DYSMOTILITY
See: Intestinal Pseudo-Obstruction
Syndrome

DIMORSIER SYNDROME
See: Growth Disorders

DISCOID LUPUS
See: Autoimmune Disorders

DOWN SYNDROME

Association for Children with
Down Syndrome
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
(800) 883-5608 (in Canada)
(403) 270-8500
(403) 270-8291 (fax)
??cdss@ican.net
http://home.ican.net/~cdss
1,2,3,4,6,7,8,9,10,1 I; French
materials

Down Syndrome Society of
Rhode Island
99 Bald Hill Rd.
Cranston, RI 02920
??dssri@aol.com
1,2,3,5,6

Foundation for Children with
Down Syndrome
17646 N. Cave Creek Rd., Ste. 152
Phoenix, AZ 85032
(612) 822-3724
(612) 822-3734 (fax)
http://www.ffcwds.org

Foundation for Children with
Down Syndrome (NJ office)
355 Bennetts Mills Rd.
Jackson, NJ 08527
(718) 623-0121

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

National Down Syndrome Congress
7000 Peachtree
Donwoddy Road, Building 5, Ste. 100
Atlanta, GA 30328
(800) 232-6372
(770) 604-9500
(770) 604-9898 (fax)
??ndfccenter@aol.com
http://www.ndfccenter.org
1,2,3,4,6,7

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

Trisomy 21 Research Foundation
933 First Colonial Rd, Ste. 109
Virginia Beach, VA 23454
(757) 425-1969
(757) 425-1822 (fax)
http://wwwtri21.org
??illeichtman@macs.net
2,4,7,8,9

DUAL SENSORY
IMPAIRMENTS
See: Deaf-Blind

DUBOWITZ SYNDROME
See also: Craniofacial Disorders;
Growth Disorders

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

DUCHENNE MUSCULAR
DYSTROPHY
See: Muscular Dystrophy

DWARFISM
See also: Growth Disorders; Short
Stature

Billy Barry 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
5746 Centerville Rd.
Tallahassee, FL 32308
(850) 893-2216
(850) 893-2440 (fax)
??dri@talstar.com
http://www.dyslexia-add.org
2,3,4

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

Recording for the Blind &
Dyslexic
20 Roszel Rd.
Princeton, NJ 08540
(609) 452-0606,
(609) 520-7990 (fax)
2; Extensive/ending 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)
http://www.dystoniafoundation.org/
??dystonia@dystoniafoundation.org/
1,2,3,4,5,6,7,8,9

Dystonia Medical Research
Foundation--Canada
116-230 Heath St. W.
Toronto, ON CAN M5P 1N8
(800) 361-8061 (Canada only)
(416) 487-8326
??Dystonia@Dystonia-foundation.org
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
(Western Canada)
304 Hawkwood Blvd., NW
Calgary, AB CAN T3G 2Y5
(416) 664-6121
2,3,4

Canadian Society for
Ectodermal Dysplasia
(Eastern Canada)
232 Macintosh Dr.
Stoney Creek, ON CAN L8E 4C2
(905) 664-6121 (wrong number)
2,3,4,9

National Foundation for
Ectodermal Dysplasia
410 E. Main St.
PO Box 114
Mascoutah, IL 62258-0114
(618) 566-2020
618-566-4718
http://www.nfed.org
nfed1@aol.com
1,2,3,4,6,7,8,9

ECTRODACTYLY-ECTODERMAL
DYSPLASIA-CLEFT LIP/PALATE
(EEC) SYNDROME
See: Cleft Palate; Craniofacial
Disorders; Ectodermal Dysplasias

EEC SYNDROME
See: Cleft Palate; Craniofacial
Disorders; Ectodermal Dysplasias

EHLERS-DANLOS SYNDROME
See also: Connective Tissue
Disorders; Glaucoma;
Visual Impairments

Ehlers-Danlos National Foundation
6399 Wilshire Blvd. #510
Los Angeles, CA 90048
(323) 651-3038,
(323) 651-1366(fax)
??LooseJoints@aol.com
http://www.ednf.org
1,2,3,4,6,8

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

ELASTORRHEXIS
See: Connective Tissue Disorders

ELASTOSIS DYSTROPHICA
SYNDROME
See: Pseudoxanthoma Elasticum (PXE)

ELEPHANTITIS
See: Lymphedema

ELLIS-VAN CREVELD SYNDROME
See: Ectodermal Dysplasias

EMERY-DREIFUSS
MUSCULAR DYSTROPHY
See: Muscular Dystrophy

EMG SYNDROME
See: Beckwith-Wiedemann Syndrome

ENCEPHALITIS, CHRONIC
LOCALIZED
See: Rasmussen Syndrome

ENCEPHALITIS &
EPILEPSY, CHRONIC
See: Rasmussen Syndrome

ENCEPHALITIS, RASMUSSEN
See: Rasmussen Syndrome

ENCEPHALOFACIAL
ANGIOMATOSIS
See: Sturge-Weber Syndrome

ENCEPHALOMYELOPATHY
See: Leigh Disease

ENCEPHALOMYELORADICULOPATHY,
ACUTE ISSEMINATED
See: Guillain-Barre Syndrome

ENCEPHALOTRIGEMINAL
ANGIOMATOSIS
See: Sturge-Weber Syndrome

ENCHONDROMATOSIS
See: Oilier 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
http://www.debra.org
1,2,3,4,5,6,7,8,9; Spanish
materials; Augest 20-22
@Torrence California

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)
http://www.aesnet.org
??info@aesnet.org
1,2,6

Epilepsy Canada
1470 Peel St., Ste. 745
Montreal, PQ CAN H3A 1T1
(877) SEIZURE {734-0873}
(514) 845-7855
(514) 845-7866 (fax)
http://www.epilepsy.ca
??epilepsy@epilepsy.ca
1,2, 4,5,6,7,8; French materials

Epilepsy Foundation of America
4351 Garden City Dr.
Landover, MD 20785-2267
(800) 332-4050
(301) 459-3700
(301) 577-2684 (fax)
http://www.efa.org
??postmaster@efa.org or
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
http://www.customforum.com/nationalbpi
??nationalbpi@powernetonline.com
1,2,3,4,5,6

ERB/DUCHENNE PALSY
See: Erb Palsy

ERDHEIM-CHESTER DISEASE
See: Histiocytosis

ERYTHROBLASTOPHTHISIS
See: Anemia, Aplastic

ERYTHROBLASTOTIC ANEMIA
OF CHILDHOOD
See: Cooley Anemia

ERYTHROID HYPOPLASIA,
CONSTITUTIONAL
See: Anemia, Diamond-Blackfan

ERYTHROHEPATIC
PROTOPORPHYRIA
See: Liver Disorders; Porphyria

ERYTHROKERATODERMIAS
See: Ichthyosis

ERYTHROPHAGOCYTIC
LYMPHOHISTIOCYTOSIS,
FAMILIAL
See: Histiocytosis

ESOPHAGEAL ATRESIA
See: VATERL Association

EVANS SYNDROME
See also: Autoimmune
Disorders; Neutropenia

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

EXOMPHALOSMACROGLOSSIA-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)
http://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
F S H Society, INC.
3 Westwood Rd.
Lexington, MA 02420
(781) 862-84221
(781) 860-0788 (fax)
http://www.fshsociety.org
??carol.perez@fshsociety.org
1,2,3,4,5,6,7,8,9

FACIOGENITAL SYNDROME
See: Aarskog Syndrome

FAMILIAL ATAXIA
See: Ataxia; Friedreich Ataxia

FAMILIAL DYSAUTONOMIA

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

Dysautonomia Foundation
633 3rd Ave, 12 Fl.
New York, NY10017
(212) 949-6644
(212) 682-7625 (fax)
1,2,3,4,5,6,7,8,9

FAMILIAL PEMPHIGUS
See: Ichthyosis

FAMILIAL SPLENIC ANEMIA
See: Gaucher Disease

FANCONI ANEMIA
See: Anemia, Fanconi

FANCONI II
See: Cystinosis

FANCONI PANMYELOPATHY
See: Anemia, Fanconi

FARBER DISEASE
See: Tay-Sachs Disease

FAS/FAE
See: Fetal Alcohol Syndrome/Effect

FATTY OXIDATION DISORDER
See also: Metabolic Disorders

Support Group for FOD Families
805 Montrose Dr.
Greensboro, NC 27410
(336) 547-8682
??goulddan@aol.com or
??FODgroup@aol.com
http://www.cinternet.net/FOD
1,3,5,6,9

FEMALE SEX
CHROMOSOME DISORDERS
See: Turner Syndrome

FETAL ALCOHOL
SYNDROME/EFFECT

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

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

National Organization on Fetal
Alcohol Syndrome
418 C St. NE
Washington, DC 20002
(800) 66NOFAS (information line)
(202) 785-4585
(202) 466-6456 (fax)
http://www.nofas.org
??nofas@erols.com
1,2,4; available in English and
Spanish

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)
2,3; group includes many
foster/adoptive parents, and
some biological
parents/caregivers

The Fetal Alcohol Syndrome
Family Resource Institute
PO Box 2525
Lynnwood, WA 98036
(800) 999-3429
(253) 531-2878
(253) 531-2668 (fax)
http://www.accessone.com/~delin
dam/
??vicfas@hotmail.com
1,2,3,4,5,6,9

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

FETAL FACE SYNDROME
See: Robinow Syndrome

FETAL IRITIS SYNDROME
See: Norrie Disease

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 Pl., Ste. 107
Fairfax, VA 22030-2208
(800) 929-4040
(703) 691-2713 (fax)
http://www.foodallergy.org
??fan@worldweb.net
1,2,4,5,6,7,9;

FORBES DISEASE
See: Glycogen Storage Diseases;
Muscular Dystrophy

FRAGILE X SYNDROME
See also: Attention Deficit Disorder;
Autism; Learning Disabilities

FRAXA Research Foundation
45 Pleasant St.
Newburyport, MA 01950
(978) 462-1866
(978) 463-9985 (fax)
info@fraxa.org
??http://www.fraxa.org
1,2,3,5,7,8,9; Internet mailing list

National Fragile X Foundation
1441 York St., Ste. 303
Denver, CO 80206
(800) 688-8765
(303) 333-6155
(303) 333-4369 (fax)
http://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
http://www.fspsg.org
??fspsg@aol.com
1,2,3,9

FRIEDREICH ATAXIA
See also: Ataxia; Muscular Dystrophy

Canadian Association of
Friedreich's Ataxia
5620 C A Jobin St.
Montreal, Quebec CAN H1P 1 H8
(514) 321-8684
(514) 321-9257 (fax)
http://www.cam.org/~acaf
1,2,8,9; French materials

FUCOSIDOSIS
See: Tay-Sachs Disease

FULLER-ALBRIGHT SYNDROME
See: McCune-Albright Syndrome

FULMINATING HYPERPYREXIA
See: Malignant Hyperthermia

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
http://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

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

GASTROINTESTINAL CANCER
See: Peutz-Jeghers Syndrome; Polyposis

GASTROINTESTINAL
DISORDERS

The Oley Foundation
214 Hun Memorial
Albany Medical Center, A-23
Albany, NY 12208-3478
(800) 776-OLEY (6539)
(518) 262-5079
(518) 262-5528 (fax)
http://www.wizvax.net/oleyfdn
??joan_bishop@ccgateway.amc.edu

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)
http://www.gaucherdisease.org
??ngf@gaucherdisease.org
1,2,3,4,5,6,7,8,9

GENEE-WIEDEMANN SYNDROME
See: Nager & Miller Syndromes

GENETIC DISORDERS

Alliance of Genetic Support Groups
4301 Connecticut Ave. NW, Ste. 404
Washington, DC 20008-2304
(202) 966-5557
(202) 966-8553 (fax)
(800) 336-GENE (4363) helpline
??info@geneticalliance.org
http://www.geneticalliance.org
1,21 Spanish materials.

Association of Genetic
Support/Australia AGSA
66 Albion St,
Surry 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 (fax)
??MLADJA@aol.com
http://www.vcfsef.org
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
200 Pine Street
San Francisco, CA 94104
(800) 826-6693
(415) 986-3162
http://www.glaucoma.org
??info@glaucoma.org
1,2,3,4,81 Spanish brochures
available.

GLUCOSYL CEREBROSIDE
LIPIDOSIS
See: Gaucher Disease

GLUTARIC ACIDURIA, TYPE I
See also: Acidemia, organic;
Lactic Acidosis

International Organization for
Glutaric Aciduria, Type I
c/o Mike Metil and Cay Welch
RD 3, Box 167A
Jersey Shore, PA 17740
(570) 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
15110 Tenth Ave SW, Ste. A
Seattle, WA 98116-1820
(206) 246-6652,
(206) 246-6531 (fax)
http:www.gluten.net
??gig@accessone.com
1,2,3,4,6,71 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)
1,2,3,4,7,9

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)
http://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 Mar/no, CA 91108
(626) 441-4118
http://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 (voice)
(919) 932-3657 (fax)
http://www.groupbstrep.org
1,2,3,4,7,8,9

GROWTH DISORDERS
See also: Dwarfism; Short Stature

Human Growth Foundation
997 Glen Cove Ave
Glen Head, NY 11545
(800) 451-6434,
(516) 671-4041,
(516) 671-4055 (fax)
??hgfound@erols.com
http://www.hgfound.org
1,2,3,4,5,6,8,91 Spanish materials

Little People's Research Fund
80 Sister Pierre Dr.
Towson, MD 21204
(800) 232-5773
(410) 494-0055
(410) 494-0062 (fax)
??lprf@lprf.org
http://www.lprf.org
1,2,8

MAGIC Foundation
1327 N. Harlem Ave.
Oak Park, IL 60302
(800) 362-4423
(708) 383-0808 (fax)
(708) 383-0899
http://www.magicfoundation.org
??mary@magicfoundation.org
1,2,3,4,5,6,91 Spanish materials,
pen pal program for children

GROWTH HORMONE DEFICIENCY
See: Growth Disorders

GROWTH RETARDATION,
INTRAUTERINE
See: Growth Disorders

GROWTH RETARDATION-ALOPECIA-PSEUDOANODONTIAOPTIC
ATROPHY
See: Ectodermal Dysplasias

GUERIN-STERN SYNDROME
See: Arthrogryposis Multiplex Congenita

GUILLAIN-BARRE SYNDROME
See also: Autoimmune Disorders

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

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

GUNTHER PORPHYRIA
See: Porphyria

HADDAD SYNDROME
See: Central Hypoventilation
Syndrome, Congenital

HAILEY-HAILEY DISEASE
See: Ichthyosis

HAIRY ELBOWS DYSPLASIA
See: Ectodermal Dysplasias

HALLERMAN-STREIFF SYNDROME
See: Craniofacial Disorders;
Ectodermal Dysplasias; Short Stature

HALLOPEAU-SIEMENS DISEASE
See: Epidermolysis Bullosa, Dystrophic

HAND-SCHULLER-CHRISTIAN
SYNDROME
See: Histiocytosis

HAND-SHOULDER SYNDROME
See: ReflexSympathetic
Dystrophy Syndrome

HARLEQUIN ICHTHYOSIS
See: Ichthyosis

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

HAYDEN SYNDROME
See: Ectodermal Dysplasias

HEAD INJURY
See: Brain Injury

HEARING IMPAIRMENTS

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

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

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

Auditory-Verbal International
2121 Eisenhower, Ste. 402
Alexandria, VA 22314
(703) 739-1049
(703) 739-0874 (TRY)
(703) 739-0395 (fax)
??audiverb@aol.com
http://www.auditory-verbal.org
1,2,3,4,6,7

Better Hearing Institute--U.S.
and Canada
5021 Blacklick Rd.
Annandale, VA 22003
(800) 327-9355 (V/TTY)
(703) 642-0580
(703) 750-9302 (fax)
 1,2,4

Cochlear Implant Club
International
5335 Wisconsin Ave. NW
Suite 440
Washington, DC 20015
(202) 895-2781
(202) 895-2782 (fax)
??pwms.cici@worldnet.att.net
http://www.cici.org
1,2,3,4,5,6,7,6

Deafness Research Foundation
575 5th Ave, 11th Floor
New York, NY 10017
(800) 535-3323, (Tel/TDD):
(212) 599-0027 (Tel/TDD):
(212) 599-0039 (fax)
??drf@DRF.org
http://www.drf.org
1,2,4,7,6;

HEAR Now
9745 E. Hampden Ave., Ste. 300
Denver, CO 80231-4923
(800) 648-4327 (V/TTY)
(303) 695-7797 (V/TTY)
(303) 695-7789 (fax)
http://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 (V/TTY)
(213) 748-5481
(213) 747-2924 (TRY)
(213) 749-1651 (fax)
http://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 (V/TTY)
(800) 287-4763 (V/TTY, CA only)
(213) 483-8789 (fax)
http://www.hei.org
??blincoln@hei.org
2,3,4

National Association of the Deaf
814 Thayer Ave.
Silver Spring, MD 20910-4500
(301) 587-1788
(301) 587-1789 (TTY)
(301) 587-1791 (fax)
http://www.nad.com
??NADHQ@juno.com
1,2,4,5,6, 7; youth program
includes Jr NAD clubs and Youth
Leadership Camp

(SEE) Center for the
Advancement of Deaf Children
PO Box 1181
Los Alamitos, CA 90720
(562) 430-1467 (voice/TTY)
(562) 795-6614 (fax)
??seectr@aol.com
http://www.seecenter.org
2,4

SHHH: Self Help for Hard of
Hearing People
7910 Woodmont Ave., Ste. 1200
Bethesda, MD 20814
(301) 657-2248
(301) 657-2249 (TRY)
(301) 913-9413 (fax)
??National@shhh.org
http://www.shhh.org
1,2,4,6,8

Telecommunications for
the Deaf, Inc.
8630 Fenton St., Ste. 604
Silver Spring, MD 20910-3803
(301) 589-3786
(301) 589-3006 (TRY)
(301) 589-3797 (fax)
1,2,4,6,7

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

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 Cued Speech
Association (NCSA)
23970 Hermatage Road
Cleaveland, Ohio 44122-4008
(216) 360-0359
??cuedspdisc@aol.com
http://www.cuedspeech.org
1,2,3,4,5,6,7

HEART DISORDERS

American Heart Association
7272 Greenville Ave
Dallas, TX 75231-4596
(800) 242-8721
(214) 706-1176
(214) 706-2139 (fax)
http://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)
http://www.csun.edu/~hfmth006/
chaser and
http://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

H.E.A.R.T.S. Connection Family
Resource Center
3101 N. Sillect Ave. Ste. 115
Bakersfield, CA 93308
(661) 328-9055 Ext. 282
(661) 328-9940 (fax)

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

HEMISHPERECTOMY
See: Rasmussen Syndrome

HEMOLYTIC ANEMIA
See: Cooley Anemia

HEMOLYTIC-UREMIC SYNDROME
See: Kidney Disorders

HEMOPHAGOCYTIC
LYMPHOHISTIOCYTOSIS
See: Histiocytosis

HEMOPHAGOCYTIC RETICULOSIS
See: Histiocytosis

HEMOPHILIA

National Hemophilia Foundation
116 W. 32nd St. 11th Fl.
New York, NY 10001-3212
(800) 424-2634
(212) 328-3700
(212) 328-3777 (fax)
http://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)
http://www.wfh.org
??wsh@wfh.org
1,2,4,6,8; worldwide referrals,
guide for travelers

HEMORRHAGIC NODULAR
PURPURA
See: Fabry Disease

HEPATIC DUCTULAR
HYPOPLASIA, SYNDROMATIC
See: Alagille Syndrome

HEPATOPHOSPHORYLASE
DEFICIENCY GLYCOGENOSIS
See: Glycogen Storage Diseases;
Muscular Dystrophy

HEREDITARY KIDNEY
DISEASES
See: Kidney Diseases, Hereditary

HEREDITARY LEPTOCYTOSIS
See: Cooley Anemia

HERMANSKY-PUDLAK
SYNDROME
See also: Albinism &
Hypopigmentation; Visual Impairments

Hermansky-Pudlak Syndrome
Network Inc.
1 South Rd.
Oyster Bay, NY 11771
(800) 789-9477
(516) 922-3440
(516) 922-4022 (fax)
http://www.medhelp.org/web/hspn
.htm
??hpsnet@worldnet.att.net
1,2,3,6,8,9; Includes help for
families struggling with Chediak
Higashi syndrome

HERMAPHRODITISM
See also: Genitalia, Ambiguous

Intersex Society of North America
PO Box 3070
Ann Arbor, MI 48106-3070
(734) 994-7369
(734) 994-7379 (fax)
??info@isna.org
http://www.isna.org
1,2,3,6

HERNIA, DIAPHRAGMATIC

CHERUBS
PO Box 1150
Creedmoor, NC 27522
(919) 693-8158
http://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 Diseases;
Pituitary Tumors

Histiocytosis Association
of America
302 N. Broadway
Pitman, NJ 08071
(800) 548-2758 (US and Canada)
(856) 589-6606
(856) 589-6614 (fax)
http://www.histio.org
??hisiocyte@aol.com
1,2,3,4,7,8; 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 Stem Malformations;
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
1,2,3,4,6,9

HOSPITALITY HOUSING

Children's Hospital International
2202 Mt. Vernon Ave., Ste. 3C
Alexandria, VA 22301
(800) 2-4-CHILD
(703) 684-0330
(703) 684-0226 (fax)
http://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
http://www.visit_usa.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-WEBERPEUTZ
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)
??ghrf26189@aol.com
1,2,3; Spanish materials

Hydrocephalus Association
870 Market St., Ste. 705
San Francisco, CA 94102
(888) 598-3789,
(415) 732-7040 (voice),
(415) 732-7044 (fax)
http://www.hydroassoc.org
??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 Foundation
12413 Centralia Rd.
Lakewood, CA 90715-1623
(888)260-1789,
(562)402-3523,
(562)924-6666 (fax)
??hydrobrat@earthlink.net
http://www.geocities.com/HOTSPR
INGS/villa/2300
1,2,3,5,6,6,9; Have videos and
cassettes available

HYDROCEPHALUS, OBSTRUCTIVE
See: Dandy-Walker Syndrome

HYPERAMMONEMIA
See: Urea Cycle Disorders

HYPERCALCEMIA SYNDROME,
INFANTILE, IDIOPATHIC
See: Williams Syndrome

HYPERCALCEMIA-SUPRAVALVAR
AORTIC STENOSIS
See: Williams Syndrome

HYPERCYSTINURIA
See: Cystinuria

HYPERGLYCINEMIA WITH
KETOACIDOSIS AND LEUKOPENIA
See: Acidemia, Organic

HYPERLEXIA
See: Autism; Language Disorders

Canadian Hyperlexia Association
300 John St.
PO Box 87673
Thornhill, ON CAN L3T 7R3
(905) 886-9163
(905) 886-4624 (fax)
http://www.ican-net/~cha
??cha@ican.net
1,2,3,5,6,9

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

HYPOPARATHYROIDISM
See also: Thyroid Disorders

Hypoparathyroidism Newsletter
2835 Salmon St.
Idaho Fall, ID 83406
(208) 524-3857
(208) 524-2619 (fax)
??hpthnews@cyberhighway.net
??jesand@ida.net
1,3,5,9
http://www.FPI.cyberhighway.net/
~hothnews/
??hpthnews@cyberhighway.net

HYPOPIGMENTATION
See: Albinism & Hypopigmention; Virtiligo

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
http://www.libertnet.org/~ichthyos
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)
??chiorg@aol.com
http://www.chionline.org
1,2,4,6,7

IMMUNE DEFICIENCY
See: Immune Disorders

IMMUNE DISORDERS
See also: Autoimmune Disorders

Immune Deficiency Foundation
25 W. Chesapeake Ave., Ste. 206
Towson, MD 21204
(800) 296-4433
(410) 321-6647
(410) 321-9165 (fax)
http://www.primaryimmune.org
??idf@clark.net
1,2,4,5,6,7,8,9; Spanish materials

IMPERFORATE ANUS
See: Anorectal Malformations

INCLUSION BODY MYOSTISIS
See: Immune Disorders

INCONTINENCE

National Association For Continence
PO Box 8310
Spartanburg, SC 29305
(800) 252-3337
(864) 579-7900
(864) 579-7902 (fax)
http://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)
http://www.simonfoundation.com
1,2,4,5,6,7; French and Spanish
material

INCONTINENTIA PIGMENTI
See also: Ectodermal Dysplasias

National Incontinentia
Pigmenti Foundation
30 E. 72th St., 16th Fl.
New York, NY 10021
(212) 452:1231
(212) 452-1406 (fax)
http://www.medhelp.org/www/nipf
.html
??nipf@pipeline.com
1,2,3,4,5,6,9; Informational
Materials are provided in eleven
different languages, including
English, Spanish, French, Italian,
Russian, Portuguese, Chinese,
Japanese, and others

INCONTINENTIA PIGMENTI
ACHROMIANS
See: Ectodermal Dysplasias;
Epilepsy; Incontinentia Pigmenti

INDIA RUBBER SKIN
See: Ehlers-Danlos Syndrome

INFANTILE FACIO-SCAPULO-HUMERAL
MUSCULAR DYSTROPHY
See: Facio-Scapulo-Humeral
Muscular Dystrophy

INFANTILE HYPERCALCEMIA
SYNDROME, IDIOPATHIC
See: Williams Syndrome

INFANTILE SPASMS
See: Epilepsy

INTESTINAL NEURONAL DYSPLASIA
See: Intestinal Pseudo-Obstruction
Syndrome

INTESTINAL POLYPOSIS
See: Peutz-Jeghers Syndrome; Polyposis

INTESTINAL POLYPOSIS-CUTANEOUS
PIGMENTATION
SYNDROME
See: Peutz-Jeghers Syndrome; 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
1,2,3,4,7,6,9
American Pseudo-Obstruction &
Hirschsprung's Disease Society
158 Pleasant St.
North Andover, MA 01845
(978) 685-4477
(978) 685-4488 (fax)
??aphs@tiac.net
1,2,3,4,6,8,9

INTRAHEPATIC RILE
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)
http://www.joubertsyndrome.com
??joubert@match.org
1,2,3,4,5,6,8,9

JUVENILE GOUT-CHOREOATHETOSIS-MENTAL
RETARDATION SYNDROME
See: Lesch-Nyhan Disease

KALLMAN SYNDROME
See: Cleft Palate; Growth Disorders;
Hearing Impairments; Kidney Disorders

KAST SYNDROME
See: Cancer; Oilier Disease

KEARNS-SAYRE SYNDROME
See: Heart Disorders; Mitochondrial
Disorders; Retinitis Pigmentosa;
Visual Impairments

KERATITIS FOLLICULARIS
SPINULOSA DECALVANS
See: Ectodermal Dysplasias; Ichthyosis

KERATITIS-ICHTHYOSIS-DEAFNESS
(KID) SYNDROME
See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KETOACIDURIA
See: Maple Syrup Urine Disease

KETOTIC HYPERGLYCINEMIA
See: Acidemia, Organic

KID SYNDROME
See: Ectodermal Dysplasias;
Ichthyosis; Hearing Impairments

KIDNEY DISEASES, HEREDITARY
See also: Cystinosis; Kidney
Disorders, Hereditary; Oxalosis &
Hyperoxaluria

Hereditary Nephritis Foundation
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
http://www.aakp.org
1,2,4,6,7,8

American Kidney Fund
6110 Executive Blvd., Ste. 1010
Rockville, MD 20852
(800) 638-8299
(301) 881-0898 (fax)
(301) 881-0898
http://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)
http://www.cpkdrc.org
2,4

Kidney Foundation of Canada
300-5165 Sherbrooke St. W.
Montreal, PQ CAN H4A IT6
(514) 369-4806
(514) 369-2472 (fax)
??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) 779-0068 (fax)
http://www.kidney.org
1,2,4,5,6,7,8
Polycystic Kidney
Research Foundation
4901 Main St., Ste. 200
Kansas City, MO 64112-2634
(800) 753-2873
(816) 931-2600
(816) 931-8655 (fax)
http://www.pkdcure.org
??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's Syndrome
Association, Inc.
PO Box 119
Roseville, CA 95661-0119
(916) 773-2999
http://www.genetic.org
??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

KUPPEL-TRENAUNAY SYNDROME
See also: Nevi, Giant Congenital;
Sturge- Weber Syndrome;
Vascular Ma/formations

Klippel-Trenaunay Support Group
c/o Judy Vessey
5404 Dundee Rd.
Edina, MN 55424
(612) 925-2596
(612) 333-8685 (fax)
http://www.k-t.org
??jvessey@usawest.net
1,2,3,4,6,9

KLIPPEL-TRENAUNAY-WEBER
SYNDROME
See: Klippel-Trenaunay Syndrome

KRABBE DISEASE
See: Leukodystrophy, Tay-Sachs Disease

KUFS DISEASE
See: Batten Disease; Tay-Sachs Disease

KUGELBERG-WELANDER DISEASE
See: Spinal Muscular Atrophy

KUSSMAUL-LANDRY PARALYSIS
See: Guillain-Barre Syndrome

KYPHOSIS
See: Scoliosis

LACTATE DEHYDROGENASE
DEFICIENCY
See: Muscular Dystrophy

LACTIC ACIDOSIS
See also: Glutaric Aciduria, Type I;
Leigh's 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 PARALYSIS
See: Guillain-Barre Syndrome

LANGER-GIEDION SYNDROME
See: Ectodermal Dysplasias;
Exostoses, Multiple Hereditary

LANGERHANS CELL
HISTIOCYTOSIS
See: Histiocytosis; Language
Disorders

LATEX ALLERGY
Latex Allergy Information Service
176 Roosevelt Ave,
Torrington, CT 06790
(860) 482-6869
(860) 482-2294 (fax)
http://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)
??ldanatl@usaor.org
http://www.ldanatl.org
1,2,4,5,7; Spanish Materials

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

Learning Disabilities
Association of New York
27 West 20th St., Ste 303
New York, NY 10011
(212) 645-6730
(212) 924-8896 (fax)

National Center for Learning
Disabilities
381 Park Ave S, Ste 3401
New York, NY 10016
(212) 545-7510,
(212) 545-9665 (fax),
(888)575-7373 (inform)
http://www.ncld.org
1,2,4,7

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

Resource for Children with
Special Needs, Inc
200 Park Ave. S., Ste. 816
New York, NY 10003
(212)677-4650,
(212)254-4040 (fax)
??resourcesnyc@prodigy.net2,4

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

LENZ-PASSARGE DYSPLASIA
See: Ectodermal Dysplasias

LEPTOCYTOSIS, HEREDITARY
See: Cooley Anemia

LEPTOMENINGEAL ANGIOMATOSIS
See: Sturge-Weber Syndrome

LESCH-NYHAN DISEASE
International Lesch-Nyhan
Disease Association
11042 Ferndale St.
Philadelphia, PA 19116
(215) 677-4206
2,3

International Lesch-Nyhan
Disease Registry
Mathenyl School and Hospital
Institute of Applied Research
PO Box 339
Peapack, NJ 07977
(908) 234-0618
(908) 234-0963
??info@matheny.org
http://www.matheny.org
2,3,9

Lesch-Nyhan Registry
Dept of Psychiatry
New York Univ., School of Medicine
550 First Ave.
New York, NY 10016
(212) 263-6458
(212) 629-9523 (fax)
??andersnl@is2.nyu.edu

LETTERER-SIWE DISEASE
See: Histiocytosis

LEUKEMIA
See also: Bone Marrow
Transplant; Cancer

Leukemia Research Fund
of Canada
Attn: 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)
http://www.leukemia.org
1,2,3,4,5,7,8; Spanish materials

LEUKODYSTROPHY
See also: Myelin Disorders, Tay-Sachs
Disease

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

LEUKODYSTROPHY,
METACHROMATIC
See: Leukodystrophy, Tay-Sachs Disease

LIMB DISORDERS
See also: Amputation

Superkids: A Newsletter for
Families and Friends of Children
with Limb Differences
60 Clyde St.
Newton, MA 02460-2250
http://www.superkids.org
1,3

LIMB-GIRDLE
MUSCULAR DYSTROPHY
See: Muscular Dystrophy

LIMIT DEXTRINOSIS
See: Glycogen Storage Diseases;
Muscular Dystrophy

LIPID HISTIOCYTOSIS
See: Niemann-Pick, Type C Disease

LIPIDOSIS, CEREBROSIDE
See: Gaucher Disease

LIPOFUSCINOSES, NEURONAL
CEROID
See: Batten Disease

LIPOID HYPERPLASIA,
CONGENITAL
See: Adrenal Disorders

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

LISSENCEPHALY
See also: Epilepsy
Lissencephaly Network
716 Autumn Ridge Ln.
Fort Wayne, IN 46804
(219) 432-4310 (voice/fax)
http://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
(219) 432-4310
http://www.lissencephaly.org
1,2,3,4,6,8,9; toy-lending library

LIVER DISEASE AND
TRANSPLANT (PEDIATRICS)
See also: Liver Disorders

Children's Liver Alliance
(formerly the Biliary Atresia &
Liver Transplant Network BALT)
3835 Richmond Ave., Box 190
Staten Island, NY 10312-3828
(718) 987-6200 (voice/fax)
http://www.livertx.org
??Livers4Kids@earthlink.net
1,2,3,4,5,6, 7,9; Spanish materials

LIVER DISORDERS

American Liver Foundation
75 Maiden Ln.
Ste. 603
New York, NY 10038-4810
(800) 223-0179,
(800) GO-LIVER,
(888) 4-HEP-ABC,
(212) 668-1000,
(212) 668-2000 (fax)
??webmail@liverfoundation.org
http://www.liverfoundation.org
1,2,4,5,7,8,9; Spanish materials

Canadian Liver Foundation
365 Bloor St. E, Ste. 200
Toronto, ON CAN M4W 3L4
(800) 563-5483 (Canada only),
(416) 964-1953,
(416) 964-0024 (fax)
??clf@liver.ca
http://www.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 QT SYNDROME
See also: Heart Disorders

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

Sudden Arrhythmia Death
Syndromes (SADS) Foundation
508 E. South Temple, Ste. 20
Salt Lake City, UT 84102
(800) 786-7723
(801) 531-0945 (fax)
http://www.sads.org
??sads@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
http://www.medhelp.org/lowesyndrome
??lsa@medhelp.org
1,2,3,4,7,9

LOWE-BICKEL SYNDROME
See: Lowe Syndrome

LOWE-TERRY-MACHLACHLAN
SYNDROME
See: Lowe Syndrome

LUNG DISEASES

American Lung Association
1740 Broadway, 14th Fl.
New York, NY 10019
(800) LUNG-USA
(212) 315-8700
(212) 265-5642 (fax)
(212) 315-8872 (fax)
http://www.lung.usa.org
??info@lungusa.org
2,4,5,6,7,8; Spanish materials

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

LUPUS ERYTHEMATOSUS

Lupus Foundation of America
1300 Piccard Dr. Ste. 200
Rockville, MD 20850
(800) 588-0121
(888) 38 lupus (385-8787)
(800) 558-0231 (Spanish)
(301) 670-9292,
(301) 670-9486 (fax)
??info@lupus.org
http://www.lupus.org
1,2,4,5,6,7,8; Spanish materials

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

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 (phone & fax)
??lupuscan@cadvision.com
http://www.lupuscanada.org
2, 4,5,6, 7,8; French materials

LYME DISEASE

American Lyme Disease
Foundation, Inc.
Mill Pond Offices.
293 Rt. 100
Somers, NY 10589
(914) 277-6970
(914) 277-6974 (fax)
http://www.aldf.com
??inquire@aldf.com
1,2,4,6,8

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)
http://www.lyme.org
??lymefnd@aol.com
1,2, 4,6,7; Spanish materials; May
of 2000, in London

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

LYMPHEDEMA

National Lymphedema Network
2211 Post St., Ste. 404.
San Francisco, CA 94115
(800) 541-3259
(415) 921-1306
Einln@lymphnet.org
http://www.lymphnet.org
1,2,6,7,9

LYMPHOHISTIOCYTOSIS,
FAMILIAL ERYTHROPHAGOCYTIC
See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
HEMOPHAGOCYTIC
See: Histiocytosis

LYMPHOHISTIOCYTOSIS,
MALIGNANT
See: Cancer; Histiocytosis

LYMPHOMA
See: Leukemia

MACULAR DISEASES
See also: Retinitis Pigmentosa; Usher
Syndrome; Visual Impairments

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

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

Stargardt Macular Dystrophy
and Other Juvenile Macular
Dystrophies Self Help Network
c/o Macular Degeration
International
6700 N. Oracle Rd, Ste. 505
Tucson, AZ 85704
(800) 393-7634,
(520) 797-2525,
(520) 797-8018 (fax)
??info@maculardegeneration.org
http://www.maculardegeneration.org

MACULAR DYSTROPHIES,
JUVENILE
See: Macular Diseases;

MAFFUCCI SYNDROME
See: Cancer; Ollier Disease

MALE SEX
CHROMOSOME DISORDERS
See Klinefelter Syndrome

MALIGNANT HYPERTHERMIA

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

Malignant Hyperthermia
Association of the United States
39 East State St.
PO Box 1069
Sherburne, NY 13460
(800) 986-4287,
(607) 674-7901,
(800) 674-7910 (fax)
??mhaus@norwich.net
http://www.mhaus.org
1,2,9; Spanish/Italian materials

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

MANDIBULOFACIAL
DYSOSTOSIS
See: Nager & Miller Syndromes;
Treacher Collins Syndrome

MANNOSIDOSIS
See: Tay-Sachs Disease

MAPLE SYRUP URINE DISEASE
See also: Acidemia, Organic;
Metabolic Disorders

Maple Syrup Urine Disease
Family Support Group
5720 Buckfield Ct.
Fort Wayne, IN 46804
(219) 436-0137
1, 2, 3, 6, 9; parent-professional
network

MARDEN-WALKER SYNDROME
See Cleft Palate; Connective Tissue
Disorders; Growth Disorders

MARFAN SYNDROME
See also: Connective Tissue
Disorders; Heart Disorders; Scoliosis

Canadian Marfan Association
Centre Plaza Postal Outlet
128 Queen St., S.
PO Box 42257
Mississauga, ON L5M 4Z0
(905) 826-3223
(905) 826-2125
??info@marfan.ca
http://www.marfan.ca
1,2,3,4,5,8,7,8,9

National Marfan Foundation
382 Main St.
Port Washington, NY 11050-3121
(800) 8MARFAN [862-7326]
(516) 883-8712
(516) 883-8040 (fax)
http://www.marfan.org
??staff@marfan.org
1,2,3,4,5,6,7,8

MARKER X SYNDROME
See: Fragile X Syndrome

MARTEAUX-LAMY SYNDROME
See: Mucopolysaccharidosis: Tay-Sachs
Disease

MARSHALL SYNDROME, TYPE I
See: Ectodermal Dysplasia

MARTIN-BELL SYNDROME
See: Fragile X Syndrome

MAST CELL DISEASE,
SYSTEMIC

Mastocytosis Society
433 E. 300 S.
Spanish Fork, UT 84660-2147
(801) 798-2032
(801) 798-2032
??cybermom@uswest.net
http://www.mastocytosis.com
1,2,3,4,5,6

MCARDLE DISEASE
See: Glycogen Storage Diseases;
Muscular Dystrophy

MCCUNE-ALBRIGHT
SYNDROME
See also: Growth Disorders

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

MEDITERRANEAN ANEMIA
See: Cooley Anemia

MEDIUM-CHAIN ACYL-COA
DEHYDROGENASE DEFICIENCY
(MCAD)
See: Fatty Oxidation Disorder

MEDULLOBLASTOMA,
HEREDITARY
See: Brain Tumors

MEERKEREN-EHLERS-DANLOS
SYNDROME
See: Ehlers-Danlos Syndrome

MEIGE DISEASE
See: Lymphedema

MELANOLEUCODERMA
ECTODERMAL DYSPLASIAS
See: Peutz-Jeghers Syndrome;
Polyposis

MELAS SYNDROME
See: Growth Disorders, Lactic
Acidosis, Mitochondrial Disorders

MELNICK NEEDLES SYNDROME
See: Growth Disorders

MEN SYNDROME I
See: Multiple Endocrine Neoplasia I

MENIERE'S SYNDROME
See: Balance Disorders & Dizziness

MENINGEAL CAPILLARY
ANGIOMATOSIS
See: Sturge-Weber Syndrome

MENKES DISEASE
See also: Liver Disorders; Metabolic
Disorders

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

MENTAL ILLNESS
See also: Mental Retardation/Mental
Illness

Canadian Mental Health
Association
2160 Yonge St.
Toronto, ON CAN M4S 2Z3
(416) 484-7750
(416) 484-4617 (fax)
??cmhanat@interlog.com
http://www.icomm.ca/cmhacan
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)
??ffcmh@crosslink.net
http://www.ffcmh.org
1,2,3,4,5,6,7; Spanish materials,

National Alliance for the
Mentally III
200 N Glebe Rd., Ste. 10150
Arlington, VA 22203-3754
(703) 524-7600
(703) 524-9094 (fax)
??NAMIOFFC@aol.com
http://www.nami.org
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
??namiofc@aol.com
http://www.cais.com/vikings/nami/in
dex.html
1,2,3,4,5,6,9

National Mental Health Services
Knowledge Exchange Network
(KEN)
11426-28
Rockville Pike, Ste. 405
Rockville, MD 20852
??ken@mentalhealth.org
http://www.mentalhealth.org
(800) 789-2647
(301) 984-8796 (fax)

MENTAL RETARDATION
See also: Mental Illness; Mental
Retardation/Mental Illness

The Arc
1010 Wayne Ave., Ste. 650
Silver Spring, MD 20910
(800) 433-5255
(301) 565-3842
(301) 565-3843 (fax)
??thearc@metronet.com
http://www.TheArc.org/welcome.html
1,2,4,5,6,7,8; Spanish materials.

Bethpage
2245 Midway Rd., Ste. 300
Carrolton, TX 75006
(972) 866-9989
(972) 991-0834
??psanchez@bethpage.org
1,2,5,6

Bethphage
The Lind Center, Ste. A.
4980 S 118th St.
Omaha, NE 68137-2220
(402) 896-3884
(402) 896-1511 (fax)
??mburke@bethphage.org
http://www.bethphage.org

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

People First International
PO Box 12642
Salem, OR 97309
(503) 362-0336
(503) 585-0287 (fax)
??heathd@open.org
http://www.open.org/people1/peple
1/:htm
1,2,4,6,8; leadership/self-advocacy
training

Voice of the Retarded
5005 Newport Dr., Ste. 108
Rolling Meadows, IL 60008
(847) 253-6020
(847) 253-6054 (fax)
??vor@compuserve.com
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)
??aamr@access.digex.net
http://www.aamr.org
1,2,4,5,6

Developmental Disabilities
Nurses Association (DDNA)
228 Grimes St., Ste. 246
Eugene, OR 97402
(800) 888-6733
(541) 485-7372 (fax)
??ddnahq@aol.com
http://www.ddna.org
1,2,4,5,6,8

National Association of the
Dually Diagnosed (NADD)
132 Fair St.
Kingston, NY 12401
(800) 331-5362
(914) 331-4336
(914) 331-4569 (fax)
??thenadd@aol.com
http://www.thenadd.org
1,2,3,4,5,6,7

MERRF SYNDROME
See: Myoclonus; Mitochondrial
Disorders

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

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, USNCanada)
(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

The World Life Foundation
PO Box 571
Bedford, TX 76095-0571
(800) 289-5433
Offers air transport for client and
one parent to facility for
metabolic disorders treatment.

METACHROMATIC
LEUKODYSTROPHY
See: Leukodystrophy, Tay-Sachs
Disease

METAPHYSEAL DYSOSTOSIS,
TYPE B IV
See: Shwachman Syndrome

METHYLMALONIC ACIDEMIA
See: Acidemia, Organic

MICROCEPHALY

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

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)
??GrosslnsCo@aol.com
3

MIKAELIAN SYNDROME
See: Ectodermal Dysplasias

MILLER SYNDROME
See: Nager & Miller Syndromes

MILLER-DIEKER SYNDROME
See: Lissencephaly

MILLER-FISCHER SYNDROME
See: Guillain-Barre Syndrome

MILROY DISEASE
See: Lymphatic Malformations;
Lymphedema

MITOCHONDRIAL DISORDERS
United Mitochondrial Disease
FoundaUon (UMDF)
COX Foundation for all
Miitochondrial Diseases
PO Box 1151
Monroeville, PA 15146-1151
(412) 793-8077
(412) 793-6466 (fax)
http://biochemgen.ucsd.edu/umdf/
1,2,3,5,6,7,8,9

MITOCHONDRIAL MYOPATHY
See: Mitochondrial Disorders;
Muscular Dystrophy

MOEBIUS SYNDROME
See also: Craniofacial Disorders;
Limb Disorders

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

MONOSOMY X
See: Turner Syndrome

MORQUIO SYNDROME
See: Mucopolysaccharidosis; Tay-Sachs
Disease

MORVAN DISEASE
See: Syringomyelia

MOTOR-SENSORY
NEUROPATHY, HEREDITARY
See: Charcot-Marie-Tooth Disease

MOYAMOYA DISEASE
See: Stroke; Vascular Malformations
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 also: Mucopolysaccharidosis; Tay-Sachs
Disease; Visual Impairments

ML4 Foundation
719 East 17th St.
Brooklyn, NY 11230
(718) 434-5067
(718) 859-7371 (fax)
??ml4@aol.com
http://www.m14.org
1,2,3,4,5,7,8,9

MUCOPOLYSACCHARIDOSIS
See also: Metabolic Disorders;
Tay-Sachs Disease

National Mucopolysaccharidosis
(MPS) Society
102 Aspen Dr.
Downingtown, PA 19335
(610) 942-0100
??presmps@aol.com
http://www.mpssociety, org
1,2,3,4,5,6,8,9; Spanish materials

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

MULTIPLE CARBOXYLASE
DEFICIENCY
See:Metabolic Disorders

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 (voice/fax)
??hockey_freak99@hotmail.com
3,9

MULTIPLE SCLEROSIS

Multiple Sclerosis Society of
Canada
250 Bloor St E, Ste. 1000
Toronto, ON CAN M4W 3P9
(800) 361-2985 (Canada only)
(416) 922-6065
(416) 922-7238 (fax)
??info@mssoc.ca
http://www.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)
??nat@nmss.org
http://www.nmss.org
1,2,4,5,8; Spanish materials

MULTIPLE SULFATASE
DEFICIENCY
See: Hearing Impairments;
Ichthyosis; Leukodystrophy; Tay-Sachs
Disease

MUSCLE
PHOSPHOFRUCTOKINASE
DEFICIENCY
See: Glycogen Storage Diseases;
Muscular Dystrophy

MUSCLE PHOSPHORYLASE
DEFICIENCY
See: Glycogen Storage Diseases;
Muscular Dystrophy

MUSCULAR ATROPHY,
PERONEAL
See: Charcot-Marie-Tooth Disease

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

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

MUSCULAR DYSTROPHY,
DEJERINE-LANDOUZY
See also: Facio-Scapulo-Humeral
Muscular Dystrophy; Ventilator Use

Muscular Dystrophy Association
3300 E. Sunrise Dr.
Tucson, AZ 85718-3208
(800) 572-1717
(520) 529-2000
(520) 529-5300 (fax)
??mda@mdausa.org
http://www.mdausa.org
1,2,3,4,5,8; Spanish materials,
local clinics, provides assistance
with wheelchair and leg brace
purchases and repairs; summer
camps; support groups.

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)
??ragbar@mdac.ca
http://www.mdac.ca
1,2,3,4,5,6,8,9; French materials

Muscular Dystrophy Family
Foundation
615 N. Alabama St.. Ste. 330
Indianapolis, IN 46204
(800) 544-1213
(317) 632-8255
(317) 632-1722 (fax)

Society for Muscular Dystrophy
Information International
PO Box 479
Bridgewater, NS CAN B4V 2X6
(902) 685-3961
(902) 685-3962 (fax)
??smdi@aura.com.com
http://www.auracom.com/~smidi/
index.html
1

MUSCULAR DYSTROPHY,
FACIO-SCAPULO-HUMERAL
See: Facio-Scapulo-Humeral
Muscular Dystrophy

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

Myasthenia Gravis Foundation
of America
123 W. Madison, Ste. 800
Chicago. IL 60602
(800) 541-5454
(312) 853-0523 (fax)
[Omega]myastheniagravis@msn.com
http://www.myasthenia.org
1,2,4,5,6,7,8,9; Spanish materials

MYASTHENIC SYNDROME OF
LAMBERT-EATON
See: Charcot-Marie-Tooth Disease

MYELIN DISORDERS
See also: Leukodystrophy, Myelin,
Insufficient

The Canadian Myelin Research
Initiative
c/o Julie and Wayne Simmons
4330 Spinningdale Ct.
Mississauga, ON CAN L5M 3J8
(905) 567-8843
(905) 567-9189 (fax)
??myelin@interlog.com
2,6,7,8,9

The Myelin Messenger
7320 N. Stable Ln.
Prescott, AZ 86305
(520) 776-7556
1,3

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

MYELODYSPLASIA
See: Anemia, Aplastic

MYELOMA
See also: Cancer; Leukemia

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

MYELOMA, MULTIPLE
See: Myeloma

MYELOSYRINGOSIS
See: Syringomyelia

MYOADENYLATE DEAMINASE
DEFICIENCY
See: Muscular Dystrophy

MYOCLONUS
See also: Epilepsy; Opsoclonus-Myoclonus
Syndrome

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

MYODENYLATE DEAMINASE
DEFICIENCY
See: Muscular Dystrophy

MYOPATHIES, CONGENITAL
See: Myotubular Myopathy, X-Linked

MYOPATHY, CENTRONUCLEAR
See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

MYOPATHY, HYPERTHYROID
See: Muscular Dystrophy; Thyroid
Disorders

MYOPATHY, HYPOTHYROID
See: Muscular Dystrophy; Thyroid
Disorders

MYOPHOSPHORYLASE
DEFICIENCY
See: Glycogen Storage Diseases

MYOSITIS
See also: Autoimmune Disorders

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

MYOSITIS OSSIFICANS
See: Fibrodysplasis Ossificans
Progressiva

MYOTONIA, CONGENITA
See: Muscular Dystrophy

MYOTUBULAR MYOPATHY,
X-LINKED
See also: Muscular Dystrophy

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

MYXEDEMA
See: Thyroid Disorders

N-ACETYL GLUTAMATE
SYNTHETASE (NAGS)
DEFICIENCY
See: Urea Cycle Disorders

NAEFELI-FRANCESCHETTI-JADASSOHN
DYSPLASIA
See: Ectodermal Dysplasias

NAEGELI-FRANCESCHETTI-JADASSOHN
SYNDROME
See: Incontinentia Pigmenti

NAGER & MILLER SYNDROMES
See also: Craniofacial Disorders;
Hearing Impairments; Limb Disorders

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

NASAL ENCEPHALOCELE
See: Craniofacial Disorders

NEMALINE MYOPATHY
See: Muscular Dystrophy

NEPHRITIS
See: Kidney Diseases, Hereditary,
Fetal Alcohol Syndrome

NEUROFIBROMATOSIS
See also: Acoustic Neuroma; Hearing
Impairments; Visual Impairments

National Neurofibromatosis
Foundation
95 Pine St., 16th Fl
New York, NY 10005
(212) 344-6633
(212) 747-0004 (fax)
(800) 323-7938 Voice
??nnff@nf.org
http://www.nf.org

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

Neurofibromatosis, Inc
8855 Annapolis, Ste. 110
Lanham, MD 20706-2924
(800) 942-6825
(301) 577-8984
(301) 577-0016 (fax)
??nfinc1@aol.com
http://www.nfinc.org
1,2,3,4,5,7,8

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)
??acn@latitudes.org
http://www.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 Assoc., Inc.
PO Box 243
905 Corydon Ave.
Winnipeg, MB CAN R3M 3S7
(800) 663-8876; (204) 489-8454
??stevensl@neutropenia.ca
http://www.neutropenia.ca
1,2,3,4,5,6,7,Promotes chapter
development and involement with
the Neutropenia SCN International
Regisry French materials

Neutropenia SCN
International Registry
Puget Sound Plaza
1325 4th Ave., Ste. 620
Seattle, WA 98101-2509
(800) 726-4463
(206) 543-9749
(206) 543-3668 (fax)
??registry@u.washington.edu
http://www.scnir.medicine.washington.edu/
1,2

NEUTROPENIA-PANCREATIC
INSUFFICIENCY
See: Shwachman Syndrome

NEVI, GIANT CONGENITAL
See also: Craniofacial Disorders;
Ichthyosis; Klippel-Trenaunay
Syndrome; Sturge-Weber Syndrome;
Vascular Malformations

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

NEVILLE DISEASE
See: Niemann-Pick Disease

NEVO SYNDROME
See: Sotos Syndrome

NIEMANN-PICK TYPE C
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)
??victory@aparseghian.org
http://www.parseghian.org
1,2,3,4,7

NONKETOTIC
HYPERGLYCINEMIA
See: Acidemia, Organic

NONNE-MILROY-MEIGE
SYNDROME
See: Lymphatic Malformations;
Lymphedema

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

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

NORMAN-ROBERTS
SYNDROME
See: Lissencephaly

NORRIE DISEASE
See also: Hearing Impairments;
Visual Impairments

Norrie Disease Foundation
Developmental Neurogenetics
Unit
Mass General Hospital
CNY #6217
149 13 St.
Charlestown, MA 02129
(617) 726-5718
(617) 724-9620 (fax)
??sims@helix.mgh.harvard.edu
http://www.neuro-.mgh.harvard.edu
2,3,4

NUTRITION

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

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)
??info@ocfoundation.org
http://www.ocfoundation.org
1,2,3,4,5,6,7,8

OBSTRUCTIVE
HYDROCEPHALUS
See: Dandy-Walker Syndrome

OCULO-AURICULO-VERTEBRAL
SPECTUM
See: Goldenhar Syndrome

OCULOCEREBRORENAL
SYNDROME
See: Lowe Syndrome

OCULODENTODIGITAL
SYNDROME; TYPE I & II
See: Ectodermal Dysplasias

OCULOOSTEOCUTANEOUS
SYNDROME
See: Ectodermal Dysplasias

ODONTOONYCHODERMAL
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
??oliiers@aol.com
http://www.uhsweb.edu.olliers/ollier
s.htm
1,3,4,9

ONDINE'S CURSE
See: Central Hypoventilation
Syndrome, Congenital

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 (phone/fax)
??opitznet@rkymtnhi.com
http://www.rkymtnhi.com/opitz
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
??clquinn@ptd.net
http://www.geocities:com/hotspring
s/spa/2.
3,9

OPTIC NERVE HYPOPLASIA
See: Septo-Optic Dysplasia

ORBITAL HYPERTELORISM
See: Craniofacial Disorders

ORGANIC ACIDEMIA
See: Acidemia, Organic

ORNITHINE
TRANSCARBAMYLASE (OTC)
DEFICIENCY
See: Urea Cycle Disorders

OROFACIODIGITAL SYNDROME,
TYPE I
See: Ectodermal Dysplasias

OSLER-WEBER-RENDU
SYNDROME
See: Hemorrhagic Telangiectasis,
Hereditary

OSTEITIS FIBROSA
DISSEMINATA
See: McCune-Albright Syndrome

OSTEOCHONDROMATOSIS
See: Exostoses, Multiple Hereditary

OSTEOGENESIS IMPERFECTA
See also: Growth Disorders

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

Osteogenesis Impertecta
Foundation
804 West Diamond Ave., Ste. 210
Gaithersburg, MD 20878
(800) 981-2663
(301) 947-0083
(301) 947-0456 (fax)
??bonelink@oif.org
http://www.oif.org
1,2,3, 4,5,6, 7; Support groups;
Spanish materials

OSTOMY

United Ostomy Association, Inc.
19722 MacArthur Blvd., Ste. 200
Irvine, CA 92612
(800) 826-0826
(949) 660-8624
(949) 660-9262 (fax)
??uoa@deltanet.com
http://www.uoa.org
1,2,4,5,6, 7; National Conference in
Reno Nevada in July

Ostomy Association of Canada,
Inc
PO Box 46057
College Park PO
444 Yonge St
Toronto, ON CAN M5B 2L8
(416) 595-5452
(416) 595-9924 (fax)
??uoacan@magic.com
http://business.atcon.com/voacanada/
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 PIN#5392
(978)461-0614
??ohf@ohf.ultranet.com
http://www.ohf.org
2,3,6,9

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 Tumors

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 Papillomatosis,
Recurrent

PAPILLON-LEFEVRE
SYNDROME
See: Ectodermal Dysplasias

PARALYSIS, PERIODIC
See: Muscular Dystrophy

PARALYTIC POLLO
See: Polio

PARAMYOTONIA CONGENITA
See: Muscular Dystrophy

PARKES-WEBER SYNDROME
See: Klippel- Trenaunay Syndrome

PARRY-ROMBERG SYNDROME
See: Craniofacial Disorders

PATIN SYNDROME
See: Fibrodysplasis Ossificans
Progressiva

PDD
See: Autism

PELIZAEUS-MERZBACHER
DISEASE
See: Leukodystrophy

PEMPHIGUS, FAMILIAL
See: Ichthyosis

PEPCK DEFICIENCY
See: Lactic Acidosis; Mitochondrial
Disorders

PERIPHERAL NEUROPATHY
See: Charcot-Marie-Tooth Disease

PERONEAL MUSCULAR
ATROPHY
See: 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)
IEhccregistry@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)
See also: Metabolic Disorders

Children's PKU Network
1520 State St., Ste. 111
San Diego, CA 92101
(619) 233-3202
(619) 233-0838 (fax)
??pkunetwork@aol.com
1,2,3,4,9; Spanish materials

National PKU News
c/o Virginia Schuett
6869 Woodlawn Ave NE, Ste. 116
Seattle, WA 98115-5469
(206) 525-8140
(206) 525-5023 (fax)
??schuett@pkunews.org
http://www.wolfenet.com/-kronmal
1,2

PHOSPHOENOLPYRUVATE
CARBOXYKINASE DEFICIENCY
See: Lactic Acidosis; Mitochondrial
Disorders

PHOSPHOFRUCTOKINASE
DEFICIENCY
See:Glycogen Storage Diseases;
Muscular Dystrophy

PHOSPHOGLYCERATE KINASE
DEFICIENCY
See: Muscular Dystrophy

PHOSPHOGLYCERATE MUTASE
DEFICIENCY
See: Muscular Dystrophy

PHOSPHORYLASE B KINASE
DEFICIENCY
See: Glycogen Storage Diseases;
Muscular Dystrophy

PHOSPHORYLASE DEFICIENCY
GLYCOGEN STORAGE
See: Diseases; Muscular Dystrophy

PIERRE ROBIN SYNDROME
See: Craniofacial Disorders; Growth
Disorders

PIGMENT DISORDERS
See: Albinism & Hypopigmentation;
Vitiligo

PILI TORTI AND ENAMEL
HYPOPLASIA
See: Ectodermal Dysplasias

PILI TORTI AND
ONYCHODYSPLASIA
See: Ectodermal Dysplasias

PITUITARY DISORDERS

Pituitary Tumor Network
Association
16350 Ventura Blvd., Ste. 231
Encino,CA 91436
(805) 499-9973
(805)499-1523 (fax)

??ptna@pituitary.com
http://www.pituitary.com
1,2,3,4,7,9

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

POLLO

Informed Parents Against VAPP
(vaccine associated paralytic
polio)
PO Box 53212
Washington, DC 20009
(888) 363-8277
(703) 319-8277 (fax)
??NOVAPP@aol.com
http://www.ipav.org
2,3,7,8,9

International Polio Network
4207 Linde, Blvd, #110
Saint Louis, MO 63108-2915
(314) 534-0475
(314) 534-5070 (fax)
??gini_intl@msn.com
http://www.post-polio.org
1,2,3, 4,5,6,7; Local support
groups.

POLYCYSTIC KIDNEY DISEASE
See: Kidney Disorders

POLYENDOCRINE
ADENOMATOSIS
See: Multiple Endocrine Neoplasia I

POLYMYOSITIS
See: Muscular Dystrophy; Myositis

POLYNEURITIS, ACUTE
IDIOPATHIC
See: Guillain-Barre Syndrome

POLYNEUROPATHY, CHRONIC
RELAPSING
See: Guillain-Barre Syndrome

POLYOSTOTIC FIBROUS
DYSPLASIA
See: McCune-Albright Syndrome

POLYPOSIS
See also: Cancer; Peutz-Jeghers
Syndrome

Familial Gastrointestinal Cancer
Registry
Mount Sinai Hospital
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 also: Glycogen Storage
Diseases; Muscular Dystrophy; Tay-Sachs
Disease

The Children's Pompe
Foundation
66 Witherspoon St., Ste. 341
Princeton, NJ 08542
(609) 924-7192
(609) 924-7143 (fax)
http://www.pompe.org
1,2

PORPHYRIA

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

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

PORT WINE STAINS
See: Sturge-Weber Sydrome

POSTAXlAL ACROFACIAL
DYSOSTOSIS
See: Nager & Miller Syndromes

PRADER-WILLI SYNDROME

Ontario Prader-Willi Syndrome
Association
1920 Yonge St. c104
Toronto, ON CAN M4S 3B2
(800) 563-1123
(416) 481-8657 (voice/fax)
??prader-willi@sympatico.ca
http://www3.sympatico.ca/prader-willi/
1,2,3,4,5,8,9; French materials

Prader-Willi Foundation
223 Main St.
Port Washington, NY 11050
(800) 253-7993
(516) 944-3173 (fax)
??foundation@prader-willi.inter.net
http://prader_willi.inter.net
2,3,4,7,8

The Prader-Willi Syndrome
Association (USA)
5700 Midnight Pass Rd., Ste 6
Sarasota, FL 34242
(800) 926-4797
(941) 312-0400
(941) 312-0142
??pwsausa@aol.com
http://www.pwsausa.org
1,2,3,4,5,6,7,8,9 English, Spanish
and French materials

PROGERIA

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

PROGRESSIVE
HYPOERYTHEMIA
See: Anemia, Aplastic

PROGRESSIVE OSSEOUS
HETEROPLASIA
See: Connective Tissue Disorders;
Fibrodysplasis Ossificans Progressiva

PROPINONYL-COA
CARBOXYLASE (PCC)
See: Deficiency Acidemia, Organic

PROPIONIC ACIDEMIA
See: Acidemia, Organic

PROTEUS SYNDROME
See: Neurofibromatosis

PROTOCOPROPORPHYRIA
See: Liver Disorders; Porphyria

PROTOPORPHYRIA
See: Liver Disorders; Porphyria

PRUNE BELLY SYNDROME
Prune Belly Syndrome Network
100 UCLA Medical Plaza Ste. 690
Los Angeles, CA 90095
(310) 825-6865
(310) 794-9962 (fax)
http://www.pedsuro.com
3,4,5,9

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
(303) 355-3866
(800) 832-3765
(303)355-3859
??(at Texas Tech.)
derckd@ttuhsc.edu
??(at Denver hdqtrs.)
prenape@estreet.com
http://www.napxe.org
1,2,3,4,6,9; newsletter provided
on tape; low-vision clinic.

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
6600 SW 92nd Ave., Ste.300
Portland, OR 97222
(503) 244-7404
(503) 245-0626 (fax)
??getinfo@npsusa.org
http:#www.psoriasis.org
1,2,3,4,6,7,8,9; Spanish materials

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

PULMONARY VALVULAR
STENOSIS
See: Heart Disorders

PURINE METABOLIC
DISORDERS

Purine Research Society
5424 Beech Ave.
Bethesda, MD 20814-1730
(301) 530-0354
(301)564-9597 (fax)
[Epurine@erols.com
http://www2.dgsys.com/~purine/
1,2,3,5,6,7

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
??cbf@nyp.org
http://www.ultranet.com/~itpsoc
1,2,3,7,8,9

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
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: Epilepsy; Seizure Disorders

Rasmussen Syndrome Support
Group
c/o Al and Lynn Miller
8235 Lethbridge Rd
Millersville, MD 21108
(410) 987-5221 (voice/fax)
??rssnlynn@aol.com
http://medhlp.netusa.net/
http://www/rasm.htm
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)
http://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)
??mstern@pucc.princeton.edu
http://members.aol.com/rrpf/
rrpf.html
1,2,3,4,7,8,9

RETINITIS PIGMENTOSA
See also: Macular Diseases;
Stargardt Disease; Usher Syndrome;
Visual Impairments

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

RETINITIS PIGMENTOSA
See also: Macular Diseases; Usher
Syndrome; Visual Impairments

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

RETINITIS PIGMENTOSA
See also: Macular Diseases; Usher
Syndrome; Visual Impairments

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

RETINOBLASTOMA
See: Cancer; Visual Impairments

National Retinoblastoma Parent
Group
PO Box 317
Watertown, MA 02471
(800) 562-6265
1,2,3,4,6,9

RETINOCEREBRAL
ANGIOMATOSIS
See: Von Hippel-Lindau Syndrome

RETINOPATHY OF
PREMATURITY (ROP) DH
See also: 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)
??irsa@rettsyndrome.org
http://www.rettsyndrome.org
1,2,3,4,6,7,8,9,
Spanish/French/Russian/German
materials.

Ontario Rett Syndrome
Association
147 Westdale Rd.
Oakville, ON CAN L6L 4Z7
(905) 844-7673
(905) 884-8730 (fax)
??rettsont@cgocable.net
http://www.cgocable.net/~rettsont
1,2,3,4,5,7,8,9

REYE SYNDROME
See: Fatty Oxidation Disorder

RILEY-DAY SYNDROME
See: Familial Dysautonomia

RING CHROMOSOME 15
See also: Chromosome Deletions;
Craniofacial Disorders; Epilepsy;
Heart Disorders; Kidney Disorders;
Limb Disorders; Scoliosis

RING CHROMOSOME 18
See: Chromosome 13 & 18
Disorders; Chromosome 18
Disorders Chromosome Deletions;
Craniofacial Disorders; Deaf-Blind;
Hearing Impairments; Visual
Impairments

RING CHROMOSOME 21
See: Chromosome Deletions

RING CHROMOSOME 22
See: Chromosome Deletions

RING CHROMOSOME 4
See: Chromosome Deletions; Wolf-Hirschhom
Syndrome

RING CHROMOSOME 6
See: Chromosome 6 Disorders

RING CHROMOSOME 9
See: Chromosome Deletions;
Craniofacial Disorders

ROBINOW SYNDROME
See also: Craniofacial Disorders;
Short Stature

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

ROBINSON SYNDROME
See: Ectodermal Dysplasias

ROMANO-WARD SYNDROME
See: Long Q-T Syndrome

ROSAI-DORFMAN DISEASE
See: Histiocytosis

ROSSELI-GULIENETTI
SYNDROME
See: Ectodermal Dysplasias

ROTHMUND-THOMPSON'S
SYNDROME
See: Ectodermal Dysplasias

RSH SYNDROME
See: Smith-Lemli-Opitz Syndrome

RUBINSTEIN SYNDROME
See: Rubinstein-Taybi Syndrome

RUBINSTEIN-TAYBI
SYNDROME
See also: Craniofacial Disorders;
Heart Disorders

Rubinstein-Taybi Parent Group
c/o Lorrie Baxter
PO Box 146
Smith Center, KS 66967
(785) 697-2984
(785) 697-2985 (fax)
??lbaxter@ruraltel.net
http://www.tucson.com/rts
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
(313)586-8038
??slantana@awol.com
http://www.nettap.com/-magic
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
(978) 750-4499
(978) 750-9902 (fax)
IEsclerofed@aol.com
http://www.scleroderma.org
1,2,3,4,5,6,7,8,9

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

United Sclerodemm Foundation, Inc.
89 Newbury St.
Danvors, MA 01923
(800) 722-HOPE (4673)
(978)750-4499
(978)535-6696 (fax)
??sfinfo@aol.com
http://www.scleroderma.com
1,2,4,5,6,7,8,9.

SCOLIOSIS

National Scoliosis Foundation
5 Cabot Pl.
Stoughton, MA 02072
(800) 673-6922
(781) 341--6333
(781) 341-8333
??scoliosis@aol.com
http://www.scoliosis.org
1,2,3,4,5,6,7

SECKEL SYNDROME
See: Craniofacial Disorders; Growth
Disorders

SEIZURE DISORDERS
See also: Epilepsy

THRESHOLD--intractable
Seizure Disorder Support Group
& Newsletter
Lion Head Office Park., Ste.8A
Brick, NJ 08733
(Sfsnj@aol.com
http://www.efnj.com
1

SENSORY AND AUTONOMIC
NEUROPATHY, HEREDITARY
See: Familial Dysautonomia

SENSORY MOTOR
NEUROPATHY, HEREDITARY
See: Charcot-Marie-Tooth Disease

SENSORY NEUROPATHY WITH
ANHIDROSIS, CONGENITAL
See: Familial Dysautonomia

SEPTO-OPTIC DYSPLASIA
See also: Pituitary Tumors; Visual
Impairments

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

SERUM PROTEASE INHIBITOR
DEFICIENCY
See: Alpha-1-Antitrypsin (AAT)
Deficiency

SEVERE COMBINED
IMMUNODEFIClENCY (SClD)
See: Immune Disorders

SEX CHROMOSOME
DISORDERS, FEMALE
See: Turner Syndrome

SEX CHROMOSOME
DISORDERS, MALE
See: Klinefelter Syndrome

SHORT STATURE
See also: Dwarfism; Growth
Disorders

Little People of America
PO Box 745
Lubbock, TX 79408
(806) 797-8830 (voice/fax; call first)
Engl./Span.
(888)572-2001 (voice/fax; call first)
??padatabase@juno.com
http://www.lpaonline.com
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: Velo-Cardio-Facial Syndrome

SHWACHMAN SYNDROME
See: Growth Disorders

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

SHWACHMAN-DIAMOND
SYNDROME
See: Shwachman Syndrome

SHY-DRAGER

Shy-Drager Syndrome Support
Group
LVanderbilt University Autonomic
Dysfunction Center
Nashville, TN 37232
(800) 505-4999
(615) 343-6499

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)
1,2,3,4,5,6,6,9; National
Confrence, September 8 - 11, in
Cleaveland Ohio

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
http://www.greensboro.com/sickle/
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
(S/DS)

SILVER SYNDROME
See: Russell-Silver Syndrome

SILVER-RUSSELL SYNDROME
See: Russell-Silver Syndrome

SIMPSON-GOLABI-BEHMEL
SYNDROME
See: Beckwith-Wiedermann
Syndrome

SKELETAL ANOMALIES
See: Ectodermal Dysplasias

SKELETAL DYSPLASIA
See: Dwarfism; Growth Disorders;
Short Stature

SLEEP APNEA
See: Apnea, Sleep

SLO SYNDROME
See: Smith-Lemli-Opitz Syndrome

SLY SYNDROME
See: Mucopolysaccharidosis; Tay-Sachs
Disease

SMITH-LEMLI-OPITZ
SYNDROME
See: Craniofacial Disorders

Smith-Lemli-Opitz
Advocacy & Exchange
32 Ivy Ln.
Glen Mills, PA 19342
(610) 361-9663
http://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: Growth Disorders

Sotos Syndrome USA Support
Association
PMB #235
3 Danada Sq E.
Wheaton, IL 60187
(888) 246-SSSA
(630) 682-8815 (international)
??sssa@well.com
http://www.well.com/user/sssa/
1,2,3,4,6

SOUQUES-CHARCOT
SYNDROME
See: Progeria

SOUTH AFRICAN GENETIC
PORPHYRIA
See: Liver Disorder; 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: Amold-Chiari Malformation;
Hydrocephalus; Incontinence; Latex
Allergy

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

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

SPINAL CORD INJURIES
See also: Ventilator Use

Christopher Reeve Paralysis
Foundation
500 Morris Ave.
Springfield, NJ 07081
(800) 225-0292
(973) 379-2690
(973) 912-9433 (fax)
??paralysis@aol.com
http://www.paralysis.org
1,2,7

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)
NSCIA2@aol.com
http://www.trader.com/users/5010/1
020/nscia.htm
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
http://www.scihotline.org
2,3,4,5

SPINAL MUSCULAR ATROPHY
See also: Muscular Dystrophy;
Ventilator Use

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

SPINOCEREBELLAR ATAXIA
See: Ataxia; Friedreich Ataxia

SPLENIC ANEMIA, FAMILIAL
See: Gaucher Disease

SPONDYLOEPIPHYSEAL
DYSPLASIA CONGENITA
See: Clett Palate; Growth Disorders;
Visual Impairments

SPONDYLOEPIPHYSEAL
DYSPLASIA TARDA
See: Growth Disorders

SSPE
See: Subacute Sclerosing
Panencephalitis

STAR PROTEIN DEFICIENCY
See: Adrenal Disorders

STEELY HAIR DISEASE
Menkes Disease

STENGEL SYNDROME
See/Batten Disease

STENGEL-BATTEN-MAYOU-SPIELMEYER-VOGT DISEASE
See: Batten Disease

STICKLER SYNDROME

Stickler Involved People (SIP)
15 Angelina Dr.
Augusta, KS 67010
(316) 775-2993
http://www.stickler.org
??sip@stickler.org
1,2,3,6

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

STROKE
See also: Heart Disorders

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

STURGE-WEBER SYNDROME
See also: Craniofacial Disorders;
Epilepsy; Glaucoma; Klippel-
Trenaunay Syndrome; Nevi, Giant
Congenital; Neurofibramatosis;
Tuberous Sclerosis; Vascular
Malformations; Von Hippel-Lindau
Syndrome

Sturge-Weber Foundation
PO Box 418
Mount Freedom, NJ 07970
(800) 627-5482
(927) 895-4445
(927) 895-4846 (fax)
??swf@sturge-weber.com
http://www.sturge-weber.com
1,2,3,4,6,7,8,9

Sturge-Weber Foundation
(Canada) Inc
1960 Prairie Ave.
Port Coquitlam, BC CAN V3B IV4
(604) 942-9209
(604) 942-6429 (fax)
??kmoore@axionet.com
http://www.inforamp.net/~cvs0590
1,2,3,4,6,7,8,9

STUTTERING

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

Speak Easy
c/o Mike Hughes
95 Evergreen Ave.
St John, NB CAN E2N 1H4
(506) 696-6799 (voice/fax)
??info@speakeasycanada.com
http://www.speakeasycanada.com
1,2,4,5,6,8

Stuttering Foundation of
America
PO Box 11749
Memphis, TN 38111-0749
(800) 992-9392
(901) 452-7343
(901) 452-3931 (fax)
stuttersfa@aol.com
http://www.stuttersfa.org
1,2,4; Spanish materials

SUBACUTE NECROTIZING
ENCEPHALOPATHY
See: Leigh Disease

SUBACUTE SCLEROSING
PANENCEPHALITIS
See also: Epilepsy; Visual Impairments

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 M4P1 P2
(800) 363-7437
(416) 488-3260
(416) 488-3864 (fax)
sidscanada@inforamp.net
http://www.sidscanada.org/sids
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)
http://www.ichp.ufl.edu/mch_netlink
/sids/sidsl.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: Amold-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)
??102563.3507@compuserve.com
http://www.dataprompt.com/syringo
1,2,3,6,9

SYSTEMIC ELASTORRHEXIS OF
TOURAINE
See: Pseudoxanthoma Elasticum (PXE)

SYSTEMIC MAST CELL
DISEASE
See: Mast Cell Disease

TANGIER DISEASE
See: Tay-Sachs Disease

TARGET CELL ANEMIA
See: Cooley Anemia

TARUI DISEASE
See: Glycogen Storage Diseases;
Muscular Dystrophy

TAY SYNDROME
See: lichthyosis

TAY-SACHS DISEASE

National Tay-Sachs and Allied
Diseases Association
2001 Beacon St., Ste 204
Boston, MA 02135
(800) 90-NTSAD
(617) 277-4463
(617) 277-0134 (fax)
??ntsad-boston@worldnet.att.net
http://www.ntsad.org
1,2,3,4,5,6, 7,6, Russian materials

TEF
See: VACTERL Association

TESCHLER-NICOLA/KILLIAN
SYNDROME
See: Pallister-Killian Syndrome

THALASSEMIA MAJOR
See: Cooley Anemia

THROMBOCYTOPENIA ABSENT
RADIUS (TAR) SYNDROME
See also: Heart Disorders; Kidney
Disorders; Short Stature

Thrombocytopenia Absent
Radius Syndrome Association
212 Sherwood Dr
Egg Harbor Twp, NJ 08234-7658
(609) 927-0418
??tarsaQaol.com
1,2,3,4,9

THYROID DISORDERS
See also: Hypoparathyroidism

Thyroid Foundation of America
Ruth Sleeper Hall
RSL 350 40 Parkman St
Boston, MA 02114-2698
(800) 832-8321
(617) 726-8500
(617) 726-4136 (fax)
??info@tsh.org (for thyroid questions)
??admin@tsh.org
http://www.tfawev.org/pub/tfa
1,2,5,6

Thyroid Foundation of Canada
96 Mack St.
Kingston, ON CAN K7L 1 N9
(613) 544-8364
(613) 544-9731 (fax)
??thyroid@kos.net
http://www.home.ican.net/~!thyroid.
Canada.html
1,2,3,7,6

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)
??touretteQix.netcom.com
http://neuro.www2.mgh.harvardedu
/tsa/tsamain.nclk
1,2,4,5,6, 7,8,9; Spanish materials

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

TRACHEOESOPHAGEAL
FISTULA (TEF)
See: VACTERL 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
http://www.treachercollinsfnd.org
1,2,3,4,6

TREMOR

International Tremor Foundation
7046 W 105th St.
Overland Park, KS 66212-1803
(913) 341-3880
(913) 341-1296 (fax)
??IntTremorFnd@worldnet.att.net
http://www.essentialtremor.org
1,2,3,4,5,7,8,9

TRICHODENTOOSSEOUS
SYNDROME; TYPES I, II & III
See: Ectodermal Dysplasias

TRICHODYSPLASIA-ONYCHOGRYPOSIS-HYPOHIDROSIS-CATARACT
See: Ectodermal Dysplasias

TRICHOFACIOHYPOHIDROTIC
SYNDROME
See: Ectodermal Dysplasias

TRICHONYCHODENTAL
DYSPLASIA
See: Ectodermal Dysplasias

TRICHONYCHODYSPLASIA
WITH XERODERMA
See: Ectodermal Dysplasias

TRICHOOCULODERMOVERTEBR
AL SYNDROME
See: Ectodermal Dysplasias

TRICHOODONTOONYCHIAL
DYSPLASIA
See: Ectodermal Dysplasias

TRICHOODONTOONYCHO-HYPOHIDROTIC
DYSPLASIA
WITH CATARACT
See: Ectodermal Dysplasias

TRICHOODONTOONYCHODERM
AL SYNDROME
See: Ectodermal Dysplasias

TRICHOODONTOONYCHODYSPL
ASIA WITH PILl TORTI
See: Ectodermal Dysplasias

TRICHOPOLIODYSTROPHY
See: Menkes Disease

TRICHORHINOPHALANGEAL
(TRP) SYNDROME
See: Ectodermal Dysplasias

TRICHOTILLOMANIA
See: Obsessive-Compulsive Disorder

TRIPHALANGEAL THUMBS-ONYCHODYSTROPHY-DEAFNESS
See: Ectodermal Dysplasias; Hearing
Impairments

TRP SYNDROME, TYPE I
See: Ectodermal Dysplasias

TRPS SYNDROME, TYPE II
See: Ectodermal Dysplasias

TUBEROUS SCLEROSIS
See also: Autism; Epilepsy; Learning
Disabilities

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

TUBEROUS SCLEROSIS
See also: Autism; Epilepsy;
Learning Disabilities

Tuberous Sclerosis Canada
Sclerose Tubereuse
2443 New Wood Dr.
Oakville, ON CA L6H 5Y3
(800) 347-0252
(905) 257-1997
??jillian.dasilva@ablelink.org
http://www.sky.net/~adamse/tubero
us.htm
1,2,3,4,7,6,9.

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
http://www.turnersyndrome.ca
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)
??shel@turner-syndrome-us.org
http://www.turner-syndrome-us.org
1,2,3,5,6,9; Spanish materials

TWIN-RELATED DISEASES

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

Twin Hope
2592 West 14th St.
Cleveland, OH 44113
(216) 228-8887
twinhope@mail.ohio.net
http://www.twinhope.com
1,2,3,4,5,7,6,9

TWIN TO TWIN TRANSFUSION
SYNDROME
See also: Twin-Related Diseases

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

TYROSINEMIA, HEREDITARY,
HEPATORENAL TYPE
See: Tyrosinemia Type I

TYROSINEMIA TYPE 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.tremblay@sympatico.ca
http://www.members.xoom.com/Tyr
osine/tyrosine.html
1,2, 4,5,9; English/French
materials; support available in
Spanish.

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
http://www.nucdf.org
1,2,3,4,6,7,6,9

UROLOGIC DISORDERS
See: Incontinence; Kidney Diseases,
Hereditary; Kidney Disorders

UROSTOMY
See: Ostomy

URTICARIA PIGMENTOSA
See: Mast Csll Diseases

USHER SYNDROME
See also: Deaf-Blind; Hearing
Impairments; Retinitis Pigmentosa;
Visual Impairments

Usher Around The World
c/o Kathie Anderson
PO Box 17318
Minneapolis, MN 55417
(612) 729-4630 (V/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); Klippel-Trenaunay
Syndrome; Lymphatic
Malformations; Moyamoya Disease;
Sturge-Weber Syndrome

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

VASCULAR MALFORMATIONS
See also: Klippel Trenaunay
Syndrome; Lymphatic Malformations;
Moyamoya; Disease; Sturge-Weber
Syndrome; Von Hippel-Lindau
Syndrome

VATER ASSOCIATION
See: VACTERL Association

VEL0-CARDI0-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 DH
See also: CHARGE Association;
Craniofacial Disorders; Heart
Disorders

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
Network
(IVUN)
4207 Lindell Blvd., #110
St Louis, MO 63108-2915
(314) 534-0475
(314) 534-5070 (fax)
??gini_intl@msn.com
??jfisc48232@aol.com
http://www.post-polio.org/IVUN.html
1,2,3,4,6,7,9

VENTRICULAR DEFECTS
See: Heart Disorders

VERMIS CEREBELLAR
AGENESIS
See: Joubert Syndrome

VESTIBULAR DISORDERS
See also: Balance Disorders
& Dizziness

Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
(800) 837-8428
(503) 229-8064 (fax)
??veda@vestibular.org
http://www.vestibular.org
1,2,3,5,6; Spanish materials

VISUAL IMPAIRMENT/
HEARING IMPAIRMENT
See: DeafiBlind

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

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

American Foundation
for the Blind
11 Penn Plaza, Ste. 300
New York, NY 10001
(800) 232-3044
(212) 502-7600
(212) 502-7662 (TTY)
??afbinfo@afb.org
http://www.afb.org/afb
1,2,4,5,6,6

Blind Children's Center
4120 Marathon St.
Los Angeles, CA 90029
(800) 222-3566
(800) 222-3567 (CA only)
(323) 664-2153
(323) 665-3828 (fax)
??info@blindchildrenscenter.org
http://www.blindchildrenscenter.org
1,2,3,4,8 Spanish materials

Blind Childrens Fund
4740 Okemos Rd.
Okemos, MI 48864
(517) 347-1357
(517) 347-1459 (fax)
??blindschildrensfund@aol.com
http://www.blindchildrensfund.org
1,2,3, (networking only), 4,5,6

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

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

Canadian National Institute
for the Blind
1929 Bayview Ave.
Toronto, ON CAN M4G 3E8
(416) 486-2500
(416) 480-7417 (TTY)
(416) 480-7699 (fax)
??marjerb@east.cnib.ca
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 East 59th St.
New York, NY 10022
(800) 334-5497(voice)
(212) 821-9200 (voice)
(212) 821-9713 (TTY)
(212) 821-9705 (fax)
??mbeck@lighthouse.org
http://www.lighthouse.org
1,2,4,5,7; Spanish materials

National Association for Parents
of the Visually Impaired
PO Box 317
Watertown, MA 02471
(800) 562-6265
(617) 972-7441
(617) 972-7444 (fax)
??napvi@perkins.pvt.k12.ma.us
http://www.spedex.com/napvi
1,2,3,5,7; Spanish materials

National Association for
Visually Handicapped
22 W 21st St., 6th Fl.
New York, NY 10010
(212) 889-3141
(212) 727-2931 (fax)
??staff@navh.org
http://www.navh.org
1,2,5,6; Spanish/Russian
materials;large-print lending library.

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

National Organization for
Parents of Blind Children
1800 Johnson St.
Baltimore, MD 21230
(410) 659-9314
(612) 869-4599 (BBS)
(410) 685-5653 (fax)
??nfb@iamdigex.net
http://www.nfb.org
1,2,3,4,5,6,7 Spanish materials.

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

Recording for the Blind
& Dyslexic
20 Roszel Rd.
Princeton, NJ 08540
(609) 520-8079
(609) 520-7990 (fax)
??info2rfbd.org
http://www.rfbd.org
2

The Lighthouse National
Center for Vision and
Child Development
111 East 59th St.
New York, NY 10022
(800) 829-0500
(212) 821-9200
(212) 821-9713 (TTY)
(212) 821-9705 (fax)
??mbeckelighthouse.org
http://www.lighthouse.org
1,2,4,5,7; Spanish materials

Vision World Wide, Inc.
5707 Brockton Dr., Ste. 302
Indianapolis, IN 46220-5481
(800) 431-1739
(317) 254-1332
(317) 251-6588 (fax)
??visionww@aol.com
http://www.visionww.org
1,2,5

VITAMIN B12 METABOLISM;
INBORN ERROR OF
See: Cobalamin (B12) Defiency

VITILIGO

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

National Vitiligo Foundation
611 S. Sleishel Ave.
Tyler, TX 75701
(903) 531-0074
(903) 525-1234 (fax)
??vitiligo@trimofran.org
http://www.vitiligofoundation.org
1,2,3,5,6,7,8,9

VON GIERKE DISEASE
See: Glycogen Storage Diseases

VON HIPPEL-LINDAU
SYNDROME
See also: Ataxia; Balance Disorders &
Dizziness; Brain Tumors,' Visual
Impairments

Von Hippel-Lindau Syndrome
Family Alliance
171 Clinton Rd.
Brookline, MA 02445-5815
(800) 767-4845
(617) 232-5946
(617) 734-8233
??infoevhl.org
http://www.vhl.org
1,2,3,4,5,7,8,9;
Spanish/French/German/Dutch/Italian
materials.

VON RECKLINGHAUSEN
DISEASE
See: Neurofibromatosis

VON WILLEBRAND DISEASE
See: Hemophilia

VROLIK DISEASE, TYPE II
See: Osteogenesis Imperfecta

WALBAUM-DEHEANE-
SCHLEMMER SYNDROME
See: Ectodermal Dysplasias

WALKER-WARBURG
SYNDROME
See: Hydrocephalus; Lissencephaly

WARBURG SYNDROME
See: Hydrocephalus: Lissencephaly

WEBER SYNDROME
See: Sturge- Weber Syndrome

WEGENER GRANULOMATOSIS
See also: Immune Disorders

Wegener's Granulomatosis
Support Group, Inc
(International)
PO Box 28660
Kansas City, MO 64188-8660
(800) 277-9474
(816) 436-8211(fax)
??wgsg@wgsg.org
http://www.wgsg.org
1,2,3,4,5,6,8,9

WERDNIG-HOFFMAN DISEASE
See: Spinal Muscular Atrophy

WERLHOF DISEASE
See: Purpura, Idiopathic
Thrombocytopenia (ITP)

WERMER SYNDROME
See: Multiple Endocrine Neoplasia I

WERNER SYNDROME
See: Progeria

WHISTLING FACE SYNDROME
See: Freeman-Sheldon Syndrome

WHISTLING FACE-WINDMILL
VEIN HAND SYNDROME
See: Freeman-Sheldon Syndrome

WHITE MATTER DISORDERS
See: Leukodystrophy

WHITE SPOT DISEASE
See: Vitiligo

WHITNALL-NORMAN
SYNDROME
See: Norrie Disease

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


Canadian Association for
Williams Syndrome
PO Box 2115
Vancouver, BC CAN V6B 3T5
(604) 852-2662
(604) 855-0032 (fax)
??sev@uniserve.com
http://www.bmts.com/~williams/
1,2,3,4,5,7,8,9

Williams Syndrome Association
PO Box 297
Clawson, MI 48017-0297
(241) 641-3630
(241) 541-3631 (fax)
??WSAoffice@aol.com
http://members.aol.com/BobHazard/wsc.html
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

WISKOTT-ALDRICH SYNDROME
See: Immune Disorders; Purpura,
Idiopathic Thrombocytopenia

WOLF SYNDROME
See: Wolf-Hirshhorn Syndrome

WOLF-HIRSCHHORN
SYNDROME

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

Wolf-Hirschhorn Syndrome
Support Group and Newsletter
c/o Brenda Grimmett
5536 Virginia Ct.
Amherst, OH 44001
(440) 282-1460
??bgrimmett@eriecoast.com
http://members.aol.com/Ibent503/whs
1,2,3,4,6,9

X-LINKED COPPER
DEFICIENCY
See: Menkes Disease

X-LINKED COPPER
MALABSORPTION
See: Menkes Disease

X-LINKED MYOTUBULAR
MYOPATHY
See: Myotubular Myopathy, X-Linked;
Muscular Dystrophy

XANTHOGRANULOMATOSIS,
JUVENILE
See: Histiocytosis

XERODERMA PIGMENTOSUM

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

Easter Seals Society
1185 Eglington Ave., Ste. 800
Don Mills, Ontario CAN M3C 3P2
(416) 421-8377
(416) 696-1035 (fax)
??info@easterseals.org
http://www.easterseals.org

XERODERMA-TALIPES-ENAMEL
DEFECT
See: Ectodermal Dysplasias

ZANIER-ROUBICEK SYNDROME
See: Ectodermal Dysplasias

ZELLWEGER SYNDROME
See: Leukodystrophy

ZIEHEN-OPPENHEIM DISEASE
See: Dystonia

Association of Birth Defect
Children
930 Woodcock Rd., Ste. 225
Orlando, FL 32803
(800) 313-2232 (24-hour
registry line)
(407) 245-7035
(407) 895-0824 (fax)
http://www.birthdefects.org
??abdc@birthdefects.org

Association of Genetic
Support/Australia
740 66 Albion St.
Surry Hills, NSW 2010
Australia
(61) 2211 1462

Canadian Organization for Rare
Disorders (CORD)
PO Box 814
Coaldale, AB CAN
T1M 1M7
(877) 302-7273
(403) 345-3948
(403) 345-4544
http://www.bulli.com/~cord/
??cord@bulli.com

Easter Seal Society
250 Ferrand Dr., Ste. 200
at: Eglinton Ave.
Don Mills, ON CAN M3C 3P2
(416) 421-8377
(416) 696-1035 (fax)
http://www.easterseals.org
??info@easterseals.org

The Centre for Rare Diseases
and Disabilities
Copenhagen:
Bredgrade 25
Sct. Annae Passage,
opg F, 5th Fl.
DK-1260 Copenhagen K
Denmark
(45) 33 91 40 20
(45) 33 91 40 19 (fax)

MUMS
Mothers United for Moral Support
c/o Julie Gordon
150 Cusler Ct.
Green Bay, WI 54301-1243
(920) 336-5333
(920) 339-0995 (fax)
http://www.waisman.wisc.edu/~rowley/
mums/home.htmlx
??mums@netnet.net

National Organization for Rare
Disorders (NORD)
100 Rt. 37, PO Box 8923
New Fairfield, CT 06812-8923
(800) 999-6673 (voice)
(203) 746-6518 (voice)
(203) 746-6927 (TTY)
(203) 746-6481 (fax)
http://www.rarediseases.org
??orphan@rarediseases.org

NPPSIS
National Parent to Parent
Support and Information
Service
PO Box 907
Blue Ridge, GA 30513
(800) 651-1151
(828) 494-5415
(828) 494-5414 (fax)
http://www.nppsis.org
??nppsis@elijay.com

Parent-to-Parent Link Program
The Easter Seal Society, Ontario
1185 Eglington Ave., Ste. 800
North York, ON CAN M3C 3C6
(416) 421-8377
(416) 696-1035 (fax)
http://www.easterseals.org
??info@easterseals.org

Rare Chromosome Disorder
Group
c/o Edna Knight
Harrow Weald
160 Locket Rd.
Middlesex
England HA3 7NZ
(01144) 81-963-3557 (voice,
evening)

Research Trust for Metabolic
Diseases in Children (RTMDC)
Golden Gates Lodge
Weston Rd., Crewe
Cheshire, England CW2 5XN UK
(44) 1270 250221
(44) 1270 250244 (fax)
http://www.medhlp.netusa.net/ag
sg/agsg 1183/htm

OTHER RESOURCES
Search & Respond
C/O EXCEPTIONAL PARENT Magazine
555 Kinderkamack Rd.
Oradell, NJ 07649-1517
(201) 634-6550
(201) 634-6570 (fax)
http://www.eparent.com

EXCEPTIONAL PARENT magazine accepts
letters from parents and professionals
searching for information, networking,
or advice from others on a disability or
related problem. Some are selected for
publication in our monthly Search
column. Anyone offering a suggestion
may write a Respond letter,
which will be forwarded and may
also be published.


KEY TO SERVICES

1 Pedodical/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
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Publication:The Exceptional Parent
Article Type:Directory
Geographic Code:1USA
Date:Jan 1, 2000
Words:23111
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