Printer Friendly

National resources for specific disabilities.

THIS DIRECTORY INCLUDES NATIONAL GROUPS and organizations that can serve as resources for parents and professionals seeking information and support about specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Federally-Funded Information Resources (see page 70 for additional listings), Parent to Parent Programs (see page 76), or certain National Information and Advocacy Resources (see page 61). Matching Resources may also be useful (see page 38).

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) and 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 to the more general category.

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 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.

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. Some organizations offer advocacy and materials in other languages in addition to English. These languages are indicated after the list of services provided. When available, email addresses and Web sites have been included. Email addresses are indicated by the symbol. Unless otherwise indicated, all telephone numbers are for voice only.

This directory is current as of December 2015.

17-20-Desmolase Deficiency

See: Adrenal Disorders

17-alpha-Hydroxylase Deficiency

See: Adrenal Disorders

17-Hydroxylase Deficiency

See: Adrenal Disorders

18-Hydroxylase Deficiency

See: Adrenal Disorders

21-Hydroxylase Deficiency

See: Adrenal Disorders

3[beta]-Hydroxysteroid Dehydrogenase Deficiency

See: Adrenal Disorders

45, X Syndrome

See: Turnes Syndrome; Albinism and Hypopigmentation

47,XYY; 47,XXY; 47,XXX Syndromes

See: Klinefelter Syndrome

Abdominal Migraine

See: Cyclic Vomiting Syndrome

A-Beta-Lipoproteinemia

See: Tay-Sachs Disease

Achondroplasia

See: Growth Disorders

Acid Maltase Deficiency

NEW HAMPSHIRE DEPARTMENT OF EDUCATION

Barbara J. Raymond

Bureau of Special Education

101 Pleasant Street

Concord, NH 03301

(603) 271-6693

(603) 271-3791

(603) 271-1099

Santina.Thibedeau@doe.nh.gov

www.education.nh.gov/instruction

/special_ed/index.htm

THE CANAVAN RESEARCH FOUNDATION

88 Route 37

New Fairfield, CT 06812

(203) 746-2436

(203) 746-3205

info@canavan.org

www.canavan.org/English

Acidemia, Isovaleric (IVA)

See: Acidemia, Organic

Acidemia, Organic Metabolic Disorders

ORGANIC ACIDEMIA ASSOCIATION

Kathy Stagni

9040 Duluth Street

Golden Valley, MN 55427

(763) 559-1797

(866) 539-4060

kstagni@oaanews.org

www.oaanews.org

1,2,3,4,6,7,8 English

Acidemia, Propionic

See: Acidemia, Organic

Acoustic Neuroma

ACOUSTIC NEUROMA ASSOCIATION OF CANADA

Melanie Sexsmith

P.O. Box PMB #1005

7-B Pleasant Blvd, Toronto, ONM4T1K2

(800) 561-2622

(416) 546-6426

www.anac.ca

1,2,3,5,6 English

Acquired Immune Deficiency Syndrome

See: AIDS

Acrocephalosyndactyly, Type I

See: Apert Syndrome

Acrofacial Dysostosis, Nager Type

See: Nager and Miller Syndromes

Acromegaly

See: Multiple Endocrine Neoplasia I; Pituitary Disorders/Tumors

ACTH Deficiency

See: Adrenal Disorders

Acyl-CoA Dehydrogenase Deficiency, Medium-Chain

See: Fatty Oxidation Disorder

Addison Disease

See: Adrenal Disorders

Adipogenital-Retinitis Pigmentosa-Polydactyly Syndrome

See: Laurence-Moon-Bardet-Biedl Syndrome

Adrenal Disorders

NATIONAL ADRENAL DISEASES FOUNDATION

505 Northern Boulevard

Great Neck, NY 11021

(516) 487-4992

nadfsupport@nadf.us

www.nadf.us

1.2.3.5.6.7.8 English

Adrenocorticotropic Hormone Deficiency

See: Adrenal Disorders; Pituitary Disorders/Tumors

Adrenogenital Syndrome

See: Adrenal Disorders

Adrenoleukodystrophy

See: Leukodystroph Tay-Sachs Disease

Agenesis of the Corpus Callosum

ACC NETWORK

Kathy Schilmoeller

5766 Shibles Hall

Orono, ME 04469

(207) 581-3651

(207) 581-1110

(207) 581-3120

1,2,3,9

NATIONAL ORGANIZATION FOR DISORDERS OF THE CORPUS CALLOSUM (NODCC)

PMB 363, 18032-C Lemon Drive

Yorba Linda, CA, 92886

(714) 747-0063

(714) 693-0808

info@nodcc.org

www.nodcc.org

1,2,3,4,5,6 English

Agyria

See: Lissencephaly

Aicardi Syndrome

AICARDI SYNDROME NEWSLETTER

1510 Polo Fields Ct

Louisville, KY 40245-4468

(502) 244-9152

AICNews@aol.com

www.Aicardisyndrome.org

1.2.3.4.5.6.8 English

AIDS

NATIONAL CENTER FOR HIV/AIDS, VIRAL HEPATITIS, STD AND TB PREVENTION

11600 Clifton Road, NE

Mailstop E-49, Atlanta GA 30333

(800) CDC-info

(404) 639-2888

(404) 639-7394

cdcinfo@cdc.gov

www.cdc.gov/media/

2,4 English, Spanish

NATIONAL PEDIATRIC & FAMILY HIV RESOURCE CENTER

Estella Ortega

30 Bergen Street--ADMC #4

Newark, NJ 07103

(800) 362-0071

(973) 972-0410

(973) 972-0399

nphrc@daiid.umdnj.edu

www.thebody.com

1,2,3,5,7

Alagille Syndrome

ALAGILLE SYNDROME ALLIANCE

Cindy L. Hahn

10500 SW Starr Drive

Tualatin, OR 97062

(503) 885-0455

alagille@alagille.org

www.alagille.org

1.2.3.6.7.8.9

Alaninuria

See: Lactic Acidosis; Acidemia, Organic

Albinism & Hypopigmentation

NOAH (NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION)

Lori Aubrey

PO. Box 959

E. Hampstead, NH 03826-0959

(800) 473-2310

(603) 887-2310

(800) 648.2310

info@albinism.org

www.albinism.org/

1.2.3.4.5.6.7.9

English, Spanish Materials Only (Not Spoken)

Albright Syndrome

See: Growth Disorders

Algoneurodystrophy

See: Reflex Sympathetic Dystrophy Syndrome

All 4p- p+ Syndrome

See: Chromosome 4p

All 4q- q+ Ring 4 Chromosome

See: Chromosome 4p

Allergy

See: Asthma and Allergy; Food Allergy; Latex Allergy

Allergy, Food

See: Food Allergy

Allergy, Latex

See: Latex Allergy

Alopecia Areata

NATIONAL ALOPECIA AREATA FOUNDATION

Laura Ralph

14 Mitchell Boulevard

San Rafael, CA 94903

(415) 472-3780

(415) 472-5343

info@naaf.org

www.naaf.org

1.2.3.4.6.7.8.9 English, Spanish

Alopecia Universala Onychodystrophy-Total Vitiligo

See: Ectodermal Dysplasias; Vitiligo

Alopecia-Anosmia-Deafness Hypogonadism

See: Ectodermal Dysplasias

Alpha-1-Antitrypsin (AAT) Deficiency

ALPHA-1 FOUNDATION

Bob Campbell

3300 Ponce de Leon Blvd.

Coral Gables, FL 33134

(877) 228-7321,230

(305) 648-0088

(305) 567-1317

rcampbell@alpha1.org

www.alpha1.org

1,2,5,6,7,8,9

Alpha-Galactosidase Deficiency

See: Fabry Disease

Alport Syndrome

See: Hearing Impairments; Kidney Diseases

Alstrom Syndrome

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

Alternating Hemiplegia

See: Hemiplegia, Alternating

Amelocerebrohypho-hidrotic Syndrome

See: Ectodermal Dysplasias

Ameloonychohypho-hidrotic Dysplasia

See: Ectodermal Dysplasias

Amniotic Bands

See: Craniofacial Disorders

Amputation

AMPUTEE COALITION

900 East Hill Avenue, Suite 290

Knoxville, TN 37915-2566

(888) 267-5669,8114

(865) 525-4512

(865) 525-7917

nllicinfo@amputee-coalition.org

www.amputee-coalition.org

1,2,3,4,6,7 English, Spanish

NATIONAL AMPUTATION FOUNDATION

Laurie Romano

40 Church Street

Malverne, NY 11565

(516) 887-3600

(516) 887-3667

amps76@aol.com

www.nationalamputation.org

1,2,3,4 English

Amputation and Congenital Limb Loss

AMPUTEE COALITION

Melanie Staten

900 East Hill Avenue, Suite 390

Knoxville, TN 37915

(888) 267-5669

(865) 525-4512

(865) 525-7917

www.amputee-coalition.org

1,2,3,4,6,7 Spanish & English

materials available

AMERICAN AMPUTEE FOUNDATION

Catherine J. Walden

PO. Box 94227

Little Rock, AR 72190

(501) 835-9290

(501)835-9292

info@americanamputee.org

Amsterdam Dwarf Syndrome of de Lange

See: Cornelia de Lange Syndrome

Amylo-1, 6-Glucosidase Deficiency

See: Glycogen Storage Diseases;

Muscular Dystrophy

Amyoplasia, Congenita

See: Arthrogryposis Multiplex Congenita

Anal Atresia

See: Anorectal Malformations

Anal Stenosis

See: Anorectal Malformations

Andersen Disease

See: Glycogen Storage Diseases

Anderson-Fabry Disease

See: Fabry Disease

Anderson-Warburg Syndrome

See: Norrie Disease

Anemia, Aplastic

APLASTIC ANEMIA & MDS INTERNATIONAL FOUNDATION, INC

John Huber

100 Park Avenue, Suite 108

Rockville, MD 20850

(800) 747-2820

(301) 279-7202

(301) 279-7205

help@aamds.org

www.aamds.org

1,2,3,4,5,6,7,8,9 English, Spanish

Anemia, Aplastic

APLASTIC ANEMIA AND MYELODYSPLASIA ASSOCIATION OF CANADA

11181 Yonge St, Suite 321

Richmond Hill, ON L4S 1L2

(905) 780-0698

(888) 840-0039

(905) 780-1648

info@aamac.ca

www.aamac.ca

Anemia, Aregenerative

See: Anemia, Aplastic

Anemia, Cooley

See: Cooley Anemia

Anemia, Diamond Blackfan

See: Anemia Aplastic; Anemia, Fanconi; Autoimmune Disorders

Anemia, Erythroblastotic

See: Cooley Anemia, Thalassemia Major

Anemia, Fanconi

FANCONI ANEMIA RESEARCH FUND, INC.

Laura Hays

1801 Willamette Street, Suite 200

Eugene, OR 97401

(541) 687-4658

(888) 326-2664

(541) 687-0548

info@fanconi.org

www.fanconi.org

1.2.3.4.8 Tele-interpreters, some materials in Spanish

Anemia, Hemolytic

See: Cooley Anemia/Thalassemia Major

Anemia, Hypoplastic

See: Anemia, Aplastic

Anemia, Target Cell

See: Cooley Anemia/Thalassemia Major

Anemia, Toxic Paralytic

See: Anemia, Aplastic

Angelman Syndrome

ANGELMAN SYNDROME FOUNDATION

Sheila Wenger

75 Executive Drive, Suite 327

Aurora, IL 60504

(800) 432-6435

(630) 978-4245

(630) 978-7408

swenger@angelman.org

www.angelman.org

1,2,3,4,6,7,8

CANADIAN ANGELMAN SYNDROME SOCIETY NO CONTACT

P.O. Box 37

Priddis, AB T0L 1WO

(403) 931-2415

info@AngelmanCanada.org

www.angelmancanada.org

1,2,3,4,5,6,8

Angiokeratoma Coporis Diffusum

See: Fabry Disease

Angiomatosis Retina

See: Von Hippel-Lindau Syndrome

Angio-Osteohypertrophy Syndromi

See: Klippel-Trenaunay Syndrome

Aniridia, WAGR, Gillespie Syndrome

ANIRIDIA NETWORK INTERNATIONAL

Hannah James

109 Gavin Way

Colchester, UK CO4 9FR

(440) 120-6842742

2,3,4 English

Ankylosing Spondylitis, Juvenile

See: Arthritis

Anophthalmia, Microphthalmia, Coloboma

INTERNATIONAL CHILDREN'S ANOPHTHALMIA NETWORK

Tanya Bardakjian

Genetics, Levy 2 West

5501 Old York Rd

Philadelphia, PA 19141

(800) 580-ican

(215) 456-2356

info@anophthalmia.org

www.anophthalmia.org

1,2 English, Spanish

Anorectal Malformations, Colon Disease

PULL-THRU NETWORK

Lori Parker

1705 Wintergreen Parkway

Normal, IL 61761

(309) 262-0786

PullthruNetwork@g mail.com

www.pullthrunetwork.org/index.php

1,2,3,6,7 E-mail discussion group, weekly member chat

Anorexia Nervosa

NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS

Laura Discipio.

P.O. Box 640, Naperville, IL 60566

(630) 577-1330

anadhelp@anad.org

www.anad.org

1,2,4,5,6,7 Includes bulimia nervosa and binge-eating disorder

NATIONAL EATING DISORDERS ASSOCIATION

Claire Mysko

165 West 46th Street, Suite 402

New York, NY 10036

(212) 575-6200

(800) 931-2237

(212) 575-1650

info@NationalEatingDisorders.org

www.nationaleatingdisorders.org

1, Includes bulimia nervosa and binge-eating disorder

APECED Syndrome

See: Ectodermal Dysplasia; Hypoparathyroidism

Apert Syndrome

APERT INTERNATIONAL, INC.

Cathie Sears

c/o Don & Cathie Sears

PO. Box 2571

Columbia, SC 29202

(803) 732-2372

info@apert-international .org

www.apert.org

2,3,6,7 Listserv support

Teeter's Page

P.O. Box 2571

Columbia, SC 29202

(803) 732-2372

catndon@apert.org

www.apert.org

Aphasia, Acquired

NATIONAL APHASIA ASSOCIATION

P.O. Box 87

Scarsdale, NY 10583

(800) 922-4622

(212) 267-2812

naa@aphasia.org

www.aphasia.org

2,3,4,6,9 Chinese, Creole, English, Greek, Hebrew, Italian, Korean

Aplastic Anemia

See: Anemia, Aplastic

Apnea, Sleep

AMERICAN SLEEP APNEA ASSOCIATION

Tracy R. Nasca, Executive Director

1717 Pennsylvania Avenue NW

Suite 1025

Washington, DC 20006

(888) 293-3650

(331) 234-0091

(888) 293-3650

tnasca@sleepapnea.org

www.sleepapnea.org

7 English

Apraxia

C.H.E.R.A.B. FOUNDATION, INC. RESEARCH, APRAXIA BASE FOUNDATION

Lisa Geng

P.O. Box 8524.

Port St. Lucy, FL 34952-8524

(772) 335-5135

(866) 486 6445

help@cherab.org

www.cherab.org

3,4,5,6,7 English

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

Arteriohepatic Dysplasia

See: Alagille Syndrome

Arteriovenous Malformations (AVMs)

See: Epilepsy; Stroke; Vascular Malformations

Arthritis

ARTHRITIS FOUNDATION NEW JERSEY CHAPTER

Amy Boright Siperstein, CFRE, Regional Director

555 Route 1 South, Suite #220.

Iselin, NJ 08830

(888) 467-3112

(732) 283-4300

(732) 283-4633

info.nj@arthritis.org

www.arthritis.org

1,2,4,5,6,7,8,9 English, Spanish

ARTHRITIS SOCIETY

393 University Ave., Suite 1700

Toronto, ON M5G 1E6

(800) 321-1433

(416) 979-8366

info@on.arthritis.ca

www.arthritis.ca/ontario

English/French

Arthritis, Rheumatic Diseases, Autoimmune Diseases

NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES INFORMATION CLEARINGHOUSE (NIA)

Stephen I. Katz M.D. Ph.D.

1 AMS Circle

Bethesda, MD 20892-3675

(877) 22-NIAMS (226-4267)

(301) 565-2966

(301) 718-6366

NIAMSinfo@mail.nih.gov

www.niams.nih.gov

2,8,9 English, Spanish

Arthrochalasis Multiplex Congenita

See: Ehlers-Danlos Syndrome

Arthrogryposis Multiplex Congenita

AVENUES: A NATIONAL SUPPORT GROUP FOR ARTHROGRYPOSIS MULTIPLEX CONGENITA

Jim Schmidt

P.O. Box 5192

Sonora, CA 95370

(209) 928-3688

info@avenuesforamc.com

www.avenuesforamc.com

2,3,4,9 English, Spanish

Ascending Paraylsis

See: Guillain-Barr Syndrome

Asperger Syndrome

See: Autism

Asperger's Disorder

See: Autism

Asthma

See: Asthma & Allergy

Asthma & Allergy

ALLERGY & ASTHMA NETWORK MOTHERS OF ASTHMATICS

8229 Boone Boulevard, Suite 260

Vienna, VA 22182

(800) 878-4403

(703) 641-9595

(703) 288-5271

www.aanma.org/

1,2,4,6,7 English, Spanish

ASTHMA SOCIETY OF CANADA NOAH FARBER

124 Merton Street, Suite 401

Toronto, ON M4S 2Z2

(866) 787-4050

(416) 787-4050

(416) 787-5807

info@asthma.ca

www.asthma.ca

1,2,3 English

THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA

Helene Taylor

8201 Corporate Drive

Landover, MD 20785

(202) 466-7643

(202) 466-8940

info@aafa.org

www.aafa.org

1,2,3,4,5,6,7,8 Materials available in English, Spanish

Ataxia

NATIONAL ATAXIA FOUNDATION

2600 Fernbrook Lane, Suite 119

Minneapolis, MN 55447

(763) 553-0020

(763) 553-0167

naf@ataxia.org

www.ataxia.org

1,2,3,5,6,7 English

Ataxia Telangiectasia

ATAXIA TELANGIECTASIA CHILDREN'S PROJECT

Jennifer Thornton

5300 W. Hillsboro Blvd., Suite 105

Coconut Creek, FL 33073

(800) 543-5728

(954) 481-6611

(954) 725-1153

info@atcp.org

www.atcp.org

1,2,3,7,8,9 English, Spanish

Ataxia with Lactic Acidosis II

See: Ataxia; Lactic Acidosis; Mitochondrial Disorders

Ataxia, Familia

See: Ataxia; Friedreich Ataxia

Ataxia, Friedreich

See: Ataxia; Friedreich Ataxia

Ataxia, Spinocerebellar

See: Ataxia; Friedreich Ataxia

Atresia

See: Microtia

Atrial Septal Defects

See: Heart Disorders

Atrophia Bulborum Hereditaria

See: Norrie Disease

Attention Deficit Disorder

ATTENTION DEFICIT DISORDER ASSOCIATION (ADDA)

Evelyn Green

P.O. Box 103

Denver, PA 17517

(800) 939-1019

(800) 939-1019

info@add.org

www.add.org

1,2,3,6 English

ADD RESOURCES

Megan McDonald

1836 Westlake Ave N, Ste 303

Seattle, WA 98109

(206) 724-0599

(253) 572-3700

www.addresources.org

1,2,3,4,5, Some material available in Spanish

ADD RESOURCES

Cynthia Hammer

223 Tacoma Av So #100

Tacoma, WA 98402

(253) 759-5085

(253) 572-3700

www.addresources.org/

Attention-Deficit/Hyperactivity Disorder

CHADD--CHILDREN AND ADULTS WITH ATTENTION-DEFICIT/HYPERACTIVITY DISORDERS

4601 Presidents Drive, Suite 300

Lanham, MD 20706

(301) 306-7070

(800) 233-4050

(301) 306-7090

www.help4adhd.org

1,2,4,5,6,7 English, Spanish

NATIONAL RESOURCE CENTER

ON ADHD (CHADD)

Tim MacGeorge

4601 Presidents Drive, Suite 300

Landover, MD 20785

(301) 306-7070

(301) 306-7090

www.chadd.org

2,4

Attenuated Adenomatous Polyposis Coli

See: Colon Cancer, Hereditary

Auditory Neuropathy

See: Kernicterus

Auriculo-Oculo-Vertebral Syndrome

See: Goldenhar Syndrome

Autism

AUTISM NATIONAL COMMITTEE

Anne Bakeman

3 Bedford Green

South Burlington, VT 05403

(781) 648-1813

www.autcom.org

1,2,3,6 English and very little

Spanish

AUTISM NEW JERSEY

Suzanne Buchanan Psy.D. BCBA-D

500 Horizon Drive, Suite 530

Robbinsville, NJ 8691

(609) 588-8200

(800) 4AU-TISM

(609) 588-8858

information@autismnj.org

www.autismnj.org

1,2,3,4,5,6,7,8,9 English, Spanish

AUTISM RESEARCH INSTITUTE

Stephen M. Edelson

4182 Adams Ave

San Diego, CA 92116

(619) 563-0915

(866) 366-3361

(877) 644-1181

1,2,3,4,6,7,8,9 English, Spanish

AUTISM SPEAKS

Autism Response Team

1 East 33rd Street 4th Floor

New York, NY 10016

(888) 288-4762

(212) 252-8676

familyservices@autismspeaks.org

www.autismspeaks.org

1,2,4,5,6,7,8,9 English, Spanish

AUTISM TREATMENT CENTER OF AMERICA; HOME OF THE SON-RISE PROGRAM

Bryn N. Hogan

2080 S. Undermountain Rd

Sheffield, MA 01257

(877) 766-7473

(413) 229-3202

bryn@option.org

www.autismtreatmentcenter.org

1,2, English (some programs offered with Spanish interpretation)

KENNEDY KRIEGER INSTITUTE CENTER FOR AUTISM AND RELATED DISORDERS

Roger Abounader

707 N. Broadway

Baltimore, MD 21205

(800) 873-3377

(443) 923-9200

(443) 923-9405

www.kennedykrieger.org

1,2,4,8

NATIONAL AUTISM HOTLINE/AUTISM SERVICES CENTER

Ruth Sullivan

605 Nintieth Street

929 4th Avenue, Second Floor;

Prichard Building, P.O. Box 507

Huntington, WV 2570

(304) 525-8014

(304) 525-8026

jmoss@autismwv.org

www.autismservicescenter.org

1,2,6,7

ORGANIZATION FOR AUTISM RESEARCH

Ben Kaufman

2000 N. 14th Street, Suite 240

Arlington, VA 22201

(866) 366-9710

(703) 243-9751

info@researchautism.org

www.researchautism.org

1,2,6,8 English, Spanish

THE AUTISM SOCIETY

Scott Badesch

4340 East West Highway, Suite 350

Bethesda, MD 20814

(301) 657-0881

(800) 328-8476

(301) 657-0869

info@autism-society.org

www.autism-society.org/

1,2,4,5,6,7 English, Spanish by

phone and on Web Site

Autism and Sensory Impairments

ARI'S DEAF/HOH AND BLIND/VISUALLY IMPAIRED NETWORK

Dr. Stephen Edelson

Autism Research Institute

4182 Adams Avenue

San Diego, CA 92116

(619) 281.7165

(619) 563.6840

HearingVisionNetwork@autism.com

www.autism.com/services_visualhearing

2,3,4,6,9 English

AUTISM SPEAKS

1 East 33rd Street 4th Floor

New York, NY 10016

(212) 252-8584

(212) 252-8676

familyservices@autismspeaks.org

www.autismspeaks.org

1,2,7,5,6,7,8,9 English, Spanish

TEACCH

Divison TEACCH Administration

Box 7180, University of North

Carolina

Chapel Hill, NC 27599-7180

919-966-2174

919-966-4127

TEACCH@unc.edu

www.teacch.com

YALE CHILD STUDY CENTER

Rosa Maccioc/o Evelyn Pomichter

230 South Frontage Road

PO. Box 207900

New Haven, CT 06520-7900

(203) 785.4947

(203) 785.7402

jean.adnopoz@yale.edu

www.autism.fm

1,2,3,4,6,7,8,9 English

Autism Spectrum Disorders

Indiana Resource Center for Autism (IRCA) at Indiana University Bloonington

Dr. Cathy Pratt BCBA-D, Director

1905 North Range Road

Bloomington, IN 47408-9801

(812) 855-6508

(812) 855-9396

(812) 855-9630

prattc@indiana.edu

www.iidc.indiana.edu/irca

1,2,3,4,6,7 Written materials: Spanish, Korean, English

OASIS @ MAAP

Susan Moreno

P.O. Box 524

Crown Point, IN 46307

(219) 662-1311

info@aspergersyndrome.org

1,2,3,4,6,7,9 English, Spanish

Autoimmune Disorders

AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION (AARDA)

Virginia Ladd

22100 Gratiot Ave

Eastpointe, MI 48021-2227

(586) 776-3900

(586) 776-3903

aarda@aarda.org

www.aarda.org

1,2,7,8,9

Autoimmune Myocarditis

See: Autoimmune Disorders

Autoimmune Rheumatic Diseases

See: Scleroderma

B12 Metabolism Inborn Error of

See: Cobalamin (B12) Defiency

Baisch Syndrome

See: Ectodermal Dysplasias

Balance Disorders & Dizziness

EAR FOUNDATION

Susan Wyatt

955 Woodland Street

Nashville, TN 37206-3753

(615) 627-2724

(615) 329-7809

(615) 329-7935

info@earfoundation.org

www.earfoundation.org

Bannayan, Ruvalcaba, Rileysmith Syndrome

See: Sotos Syndrome

Bardet-Biedl Syndrome

See: Laurence-Moon-Bardet-Biedl Syndrome

Barth Syndrome

THE BARTH SYNDROME FOUNDATION, INC

Lindsay Groff, Executive Director

PO. Box 618

Larchmont, NY 10538

(850) 273-6947

(914) 303-6323

(518) 213-4061

bsfinfo@barthsyndrome.org

www.barthsyndrome.org

1,2,6,8,9 English, Deutsch, Espanol, Francais, Italiano, Nederlands, Portu

Batten Disease

BATTEN DISEASE REGISTRY

Edie Dockter

Institute for Basic Research

1050 Forest Hill Road

Staten Island, NY 10314

(718) 494-5201

(800) 952-9628

(718) 494-1072

edith.dockter@opwdd.ny.gov

2,4,5,7,8,9 English

BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION

Margie Frazier

1175 Dublin Road

Columbus, OH 43215

(800) 448-4570

(866) 648-8718

info@bdsra.org

www.bdsra.org

1,2,3,4,5,6,7,8,9 English; French; Spanish

BATTEN DISEASE SUPPORT AND RESEARCH ASSOCIATION, CANADIAN CHAPTER

Bev Maxim

17 Bell St.

Regina, SK S4S 4B7

(306) 789-9047

(800) 448-4570

gmaxim@accesscomm.ca

1,2,3,4,5,6,7,8,9 English, Spanish

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 CHILDREN'S FOUNDATION

Cheryl Hendrickson

9031 Cascadia Ave.

Everett, WA 98208

(425) 338-4610

(425) 357-8575

BWCFKathy@comcast.net

www.beckwith

wiedemannsyndrome.org

2,3,4,6,7,9 English, Spanish, Italian, French, German & other

Bedwetting

See: Incontinence

Behcet's Disease

See: Autoimmune Disorders

Benign Congenital Hypotonia

See: Spinal Muscular Atrophy

Berger Disease

See: Kidney Disorders

Beta Thalassemia Major

See: Cooley Anemia, Thalassemia Major

Beuren Syndrome

See: Williams Syndrome

Biotinidase Deficiency

See: Metabolic Disorders

Birthmark

See: Nevi, Giant Congenital

Bleeding Disorders

See: Hemophilia

Blepharophimosis, Ptosis, Epicanthus Inversus Syndrome (BPES)

See: Craniofacial Disorders

Blepharospasm

See: Dystonia

Blindness, Low Vision, Vision Impairment

LIGHTHOUSE INTERNATIONAL-INFORMATION

Nicola Shepherd

111 E. 59th Street

New York, NY 10022-1202

(800) 829-0500

(212) 821-9200

(212) 821-9707

info@lighthouse.org

www.lighthouse.org

1,2,4,7 English, Spanish

Bloch-Sulzberger Syndrome

See: Incontinentia Pigmenti

Bloom Syndrome

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

Bone Marrow Dysfunction, Pancreatic Insufficiency, Skeletal Abnormality

SHWACHMAN DIAMOND SYNDROME FOUNDATION

PO. Box 40

Avon, NY 14414

(888) 825-SDSF

info@shwachman-diamond.org

www.shwachman-diamond.org

1,2,3,4,6,8 English

Bone Marrow Transplant

BLOOD & MARROW TRANSPLANT INFORMATION NETWORK

Susan Stewart

1548 Old Skokie Road, Suite 1

Highland Park, IL 60035

(888) 597-7674

(847) 433-3313

(847) 433-4599

help@bmtinfonet.org

www.bmtinfonet.org/

1,2,3,4 English

Bone Tumor-Epidermoid Cyst-Polyposis

See: Colon Cancer, Hereditary; Polyposis

Bonnevie-Ulrich Syndrome

See: Turner Syndrome

Book Syndrome

See: Ectodermal Dysplasias

Bourneville Pringle Syndrome

See: Tuberous Sclerosis

Bowel Dysfunction/Irritable Bowel Syyndrome/GERD/Fecal Incontinence

International Foundation for Functional Gastrointestinal Disorders (IFFGD)

700 W. Virginia St. Suite 201

Milwaukee, WI 53204-1549

(414) 964-1799

(888) 964-2001

(414) 964-7176

IFFGD@iffgd.org

www.iffgd.org

1,2,6,7,8 English

Brachmann-de Lange Syndrome

See: Cornelia de Lange Syndrome

Brain Attack

See: Stroke

Brain Injury

Brain Injury Association of America

Greg Ayotte

1608 Spring Hill Rd. Suite 110

Vienna, VA 22182

(703) 761-0750 ext 642

(703) 761-0755

braininjuryinfo@biausa.org

www.biausa.org

1,2,4,5,7 Spanish materials

BRAIN INJURY ASSOCIATION OF AMERICA

Wendy Leedy

1608 Spring Hill Road, Suite 110

Vienna, VA 22102

(703) 761-0750,622

(800) 444-6443

(703) 761-0755

www.biausa.org

BRAIN INJURY; TRAUMATIC/ACQUIRED RECOVERY ASSOCIATION

Georgina McKee RN, MA

8300 Republic Airport, Suite 106

Farmingdale, NY 11735

(631) 756-1826

(631) 756-1827

inquiry@comarecovery.org

www.comarecovery.org

3,2,4,1,7

Brain Stem Malformations

See: Arnold-Chiari Malformation; Joubert Syndrome; Syringomyelia

Brain Tumors

AMERICAN BRAIN TUMOR ASSOCIATION

8550 W Bryn Mawr Suite 550

Chicago, IL 60631

(800) 886-ABTA2282

(773) 577-8750

(773) 577-8738

info@abta.org

www.abta.org

1,2,3,4,6,7,8 English

BRAIN TUMOR FOUNDATION FOR CHILDREN, INC

Mary Campbell

6065 Roswell Rd., NE Suite 505

Atlanta, GA 30328-4015

(404) 252-4107

(404) 252-4108

info@braintumorkids.org

www.braintumorkids.org

1,2,3,5,6,7,8 Spanish

BRAIN TUMOUR FOUNDATION OF CANADA

Natalie Berkiw

620 Colborne Street, Suite 301

London, ON N6B 3R9

(519) 642-7755

(800) 265-5106

(519) 642-7192

braintumour@braintumour.ca

www.braintumour.ca

CHILDREN'S BRAIN TUMOR FOUNDATION

Kayla Giacin

274 Madison Ave, Suite 1004

New York, NY 10016

(212) 448-9494

(866) 228-4673

(212) 448-1022

kgiacin@cbtf.org

www.cbtf.org

1,2,3,4,7,8 English Brain Tumors

NATIONAL BRAIN TUMOR FOUNDATION

Harriet Patterson

55 Chapel Street, Suite 200

Newton, MA 02458

(617) 924 9997

(617) 924 9998

www.braintumor.org

1,2,3,6,7,8 English, Spanish, French

NATIONAL BRAIN TUMOR SOCIETY

Dawn Grenier

124 Watertown St. Suite 2D

Watertown, MA 02472

(617) 924-9997, 105

(800) 770-8287

617) 924-9998

info@braintumor.org

www.braintumor.org

1,2,4,7,8 English

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

Amy Acton

1835 RW Berends Dr SW

Grand Rapids, MI 49519-4955

(800) 888-2876

(616) 458-2773

(616) 458-2831

info@phoenix-society.org

www.phoenix-society.org

1,2,3,6 English, Spanish

Callosal Agenesis

See: Agenesis of the Corpus Callosum; Aicardi Syndrome

Camarena Syndrome

See: Ectodermal Dysplasias

Cancer

CANADIAN CANCER SOCIETY

National Office

55 St. Clair Avenue West, Suite 300

Toronto, ON M4V 2Y7

(416) 961-7223

(416) 961-4189

ccs@cancer.ca

www.cancer.ca

2,7,8 English and French

CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION

Ruth Hoffman

10400 Connecticut Ave. Suite A

Kensington, MD 20895

(855) 858-2226

(301) 962-3520

(301) 962-3521

www.acco.org

1,2,5,6,7 English, Spanish

CHILDHOOD CANCER FOUNDATION; CANDLELIGHTERS CANADA

Megan Davidson

21 St. Clair Avenue East, Suite 801

Toronto, ON M4T 1L9

(800) 363-1062

(416) 489-6440

(416) 489-9812

info@childhoodcancer.ca

CHILDREN'S CANCER AND BLOOD FOUNDATION

Jennifer Zaleski

333 East 38th Street, Suite 830

New York, NY 10016

(212) 297-4336

(212) 297-4340

info@childrenscbf.org

www.childrenscbf.org

CURESEARCH NATIONAL CHILDHOOD CANCER FOUNDATION

Laura Thrall

4600 East West Highway, #600

Bethesda, MD 20814

(800) 458-6223

(301) 718-0042

(301) 718-0047

info@curesearch.org

www.nccf.org

1,2,6 English

NATIONAL CANCER INFORMATION CENTER

Laura Maccio

(800) 227-2345

(866) 228-4327

eNCIC@cancer.org

www.cancer.org

1,2,3,4,5,6,7,8 Spanish, English

Cancer, Brain

See: Brain Tumors

Cancer, Gastrointestinal

See: Colon Cancer, Hereditary; Polyposis

Carbamyl Phosphate Synthetase (CPS) Deficiency

See: Urea Cycle Disorders

Cardiac Disorders

See: Heart Disorders

Cardio-Facio-Cutaneous Syndrome

See: Heart Disorders; Ichthyosis

Carey Syndrome

See: Ectodermal Dysplasias

Carnitine Deficiency Syndromes

See Acidemia, Organic; Fatty Oxidation Disorder; Mitochondrial Disorders; Muscular Dystrophy

Carnitine Palmityl Transferase Deficiency

See: Acidemia, Organic; Fatty Oxidation Disorders; Mitochondrial Disorders; Muscular Dystrophy

Carpenter Syndrome

See: Craniofacial Disorders

Cartilage-Hair Hypoplasia

See: Dwarfism; Growth Disorders; Short Stature

Cartilagenous Enchondroses, Multiple

See: Ollier Disease

Cat's Cry Syndrome

See: Cri Du Chat Syndrome

Causalgia Syndrome

See: Reflex Sympathetic Dystrophy Syndrome

Celiac Disease

CANADIAN CELIAC ASSOCIATION

5170 Dixie Rd, Ste 204

Mississauga, ON L4W 1E3

(800) 363-7296

(905) 507-6208

(905) 507-4673

www.celiac.ca

Celiac Disease/Dermatitis Herpetiformes

CELIAC DISEASE FOUNDATION

Elaine Monarch

20350 Ventura Blvd Ste 240

Woodland Hills, CA 91364

(818) 716-1513

(818) 267-5577

www.celiac.org

English, Spanish Celiac Sprue, Celiac Disease, Gluten Intolerance

AMERICAN CELIAC SOCIETY

Annette Bentley

P.O. Box 23455

New Orleans, LA 70183-0455

(504) 305-2968

(504) 305-2970

americanceliacsociety@yahoo.com

www.americanceliacsociety.org

2,3,4,5,6,7,8,9 English, Spanish, Italian

CELIAC SUPPORT ASSOCIATION

Larry Brauer, Executive Director

413 Ash Street

Seward, NE 68434

(877) 272-4272

(402) 643-4108

celiacs@csaceliacs.org

www.csaceliacs.org

1,2,3,4,5,6,7,8, 9 English

Central Hypoventilation Syndrome, Congenital

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

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

UNITED CEREBRAL PALSY ASSOCIATION OF GREATER INDIANA

107 N. Pennsylvania St., Suite 804

Indianapolis, IN 46204

(317) 632-3561

(317) 632-3338

ucpa@ucpaindy.org

www.ucpaindy.org

English, some materials available in Spanish

ONTARIO FEDERATION FOR CEREBRAL PALSY

1630 Lawrence Avenue West, Suite 104

Toronto, ON M6L 1C5

(416) 244-9686

(877) 244-9686

(416) 244-6543

info@ofcp.ca

www.ofcp.ca

1,2,3,4,6,7,8

UCP KIDS (UNIQUE COMMUNITY PROGRAMS FOR KIDS)

A division of UCP of Pittsburgh

Dori Ortman

4638 Centre Avenue

Pittsburgh, PA 15213

(412) 683-7100

(888) 954-2424

(412) 683-4160

info@ucpclass.org

www.ucppittsburgh.org

1,2,3,4,7

UCP OF NEW YORK CITY

Project CONNECT

80 Maiden Lane, 8th Fl

New York, NY 10038-4811

(877) 827-2666

(212) 683-6700

(212) 951-7124

projectconnect@ucpnyc.org

www.ucpnyc.org

1,2,4

UNITED CEREBRAL PALSY OF NEW YORK CITY

Marketing & Development

80 Maiden Lane, 8th Floor

New York, NY 10038

(212) 683-6700 ext 207

(212) 951-7124

info@ucpnyc.org

www.ucpnyc.org

1,2,3,4,7

UCP (UNITED CEREBRAL PALSY)

O'Ryan Case, MPH

Director of Membership & Public

Education

1825 K Street NW, Suite 600

Washington, DC 20006

(800) 872-5827

(202) 776-0406

(202) 776-0414

info@ucp.org

www.ucp.org

1,2,3,4,5,6,7 English, Spanish

MATHENY MEDICAL & EDUCATIONAL CENTER

Deborah Andreoni

65 Highland Ave, P.O. Box 339

Peapack, NJ 7977

(908) 234-0011, 237

(908) 719-2137

admissions@matheny.org

www.matheny.org

2,7 English, Spanish

Cerebrooculorenal Dystrophy

See: Lowe Syndrome

Cerebroside Lipidosis

See: Gaucher Disease

Cerebrotendinous

See: Leukodystrophy; Tay-Sachs Disease

Chagas' Disease

See: Autoimmune Disorders

Chalasodermia

See: Connective Tissue Disorders

Chanarin-Dorfman Syndrome

See: Ichthyosis

CHANDS Association

See: Ectodermal Dysplasias

Charcot-Marie-Tooth Disease

CHARCOT-MARIE-TOOTH ASSOCIATION

Sharon Bello

PO. Box 105

Glenolden, PA 19036

(800) 606-2682 ext 114

(484) 652-2656

(610) 499-9267

info@cmtausa.org

6 English, Spanish

CHARGE Syndrome

CHARGE SYNDROME FOUNDATION, INC

Sheri Stanger

318 Half Day Rd #305

Buffalo Grove, IL 60089

(800) 442-7604

(516) 684-4720

(888) 317-4735

info@chargesyndrome.org

www.chargesyndrome.org

1,2,3,4,6,7,8 English, Spanish

Chediak Higashi syndrome

See: Hermansky-Pudlak Syndrome

Chemke Syndrome

See: Hydrocephalus; Lissencephaly

Childhood Apraxia of Speech, Speech Disorder

THE CHILDHOOD APRAXIA OF SPEECH ASSOCIATION

Kathy Bauer

416 Lincoln Avenue 2nd Fl., Pittsburgh, PA 15209

(412) 343-7102

www.apraxia-kids.org

1,2,3,4,6,8 Some website articles

in Spanish, Spanish subtitles

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: Limb Disorders

Choroideremia

See: Macular Diseases; Retinitis Pigmentosa; Visual Impairments

Christ-Siemens-Touraine Syndrome

See: Craniofacial Disorders; Ectodermal Dysplasias

Chromosome #4 under Wolf-Hirschhorn

4P-SUPPORT GROUP

Wendy Trout

2159 128th St.

New Richmond, WI 54017

(715) 248-3937

(503) 661-7546

www.4p-supportgroup.org

1,2,3,6,9

Chromosome 15

DUP15Q ALLIANCE

Kadi Luchsinger

PO. Box 674, Fayetteville, Ny 13066

(855) DUP-15QA

info@dup15q.org

www.dup15p.org

Chromosome 18 & 13 and Related Disorders

SOFT: SUPPORT ORGANIZATION FOR TRISOMY 18, 13 AND RELATED

DISORDERS

Barbara Van Herreweghe

2982 S Union St

Rochester, NY 14624

(800) 716-SOFT

(585) 594 1957

barbsoft@rochester.rr.com

www.trisomy.org

1,2,3,5,6,8 English, Spanish

Chromosome 18 Disorders

CHROMOSOME 18 REGISTRY & RESEARCH SOCIETY

Valerie Rogler

7155 Oakridge Dr.

San Antonio, TX 78229

(210) 657-4968

(210) 657-4968

office@chromosome18.org

www.chromosome18.org

1,2,3,6,7,8 English

UNIQUE--THE RARE CHROMOSOME DISORDER SUPPORT GROUP

Beverly Searle PhD

G1, The Stables

Station Road West, Oxted

Surrey, United Kingdom

RH8 9EE 0044 01883 723356

info@rarechromo.org

www.rarechromo.org

1,2,3,5,6,9 Information guides available in English and multiple languages including Spanish

Chromosome 21 Ring

See: Chromosome Deletions

Chromosome 22 Disorders

CHROMOSOME 22 CENTRAL

Murney Rinholm

7108 Partinwood Drive, Fuquay-Varina, NC 27526

(919) 567-8167

murney.rinholm@c22c.org

www.c22c.org

1,2,3,6,9 English, French, Spanish

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 5p

See: Cri Du Chat Syndrome

Chromosome 8p Disorders

8P DUPLICATION SUPPORT GROUP

Faith Callif-Daley

Genetics Ctr. 1 Children's Plaza

Dayton, OH 45404

(937) 641-5645

(937) 641-5325

callif-daleyf@childrensdayton.org

English

Chromosome 9 Disorders

TRISOMY 9 INTERNATIONAL PARENT SUPPORT

4027 E. Piedmont Dr.

Highland, CA 92346

(909) 862-4470

atoddna@sprynet.com

3 English

Chromosome 9 Ring

See: Chromosome Deletions; Craniofacial Disorders

Chromosome Abnormalities

See: Genetic Disorders

Chromosome Deletions, Trisomies, Translocations, Inversions

CHROMOSOME DISORDER OUTREACH, INC. (CDO)

Linda Sorg

PO. Box 724

Boca Raton, FL 33429-0724

(561) 395-4252

info@chromodisorder.org

www.chromodisorder.org

1,2,3,4,9 English

NATIONAL CENTER ON CHROMOSOME INVERSIONS

Jackie Barker

213 SE Charmont Lane

Lake City, FL 32025

(386) 752-1548

ncfci@msn.com

1,2 English

Chromosome Translocations

See: Chromosome Deletions

Chromosome Trisomy Disorders

See: Chromosome 13 and 18 Disorders

Chronic Encephalitis and Epilepsy

See: Rasmussen Syndrome

Chronic Fatigue Syndrome

CFIDS ASSOCIATION OF AMERICA YOUTH ALLIENCE

PO. Box 220398

Charlotte, NC 28222-0398

(704) 365-2343

(704) 365-2343

cfids@cfids.org

www.cfids.org

1,2,8

Chronic Inflammatory Demyelinating Polyneuropathy

See: Autoimmune Disorders

Chronic Inflammatory Demyelinating Polyradiculoneuropathy

See: Guillain-Barr Syndrome

Chronic Localized Encephalitis

See: Rasmussen Syndrome

Cleft Palate

CLEFT PALATE FOUNDATION

Stephanie Williamson, MS.

1504 E. Franklin St., Suite 102

Chapel Hill, NC 27514-2820

(800) 242-5338

(919) 933-9044

(919) 933-9604

info@cleftline.org

www.cleftline.org

2,4,6,7,8,9 Spanish

CMV, Congenital

See: Cytomegalovirus (CMV), Congenital

Cockayne Syndrome

SHARE AND CARE/COCKAYNE SYNDROME NETWORK

Jackie Arias Clark

P.O. Box 282

Waterford, VA 20197

(703) 727-0404

cockaynesyndrome@gmail.com

www.cockaynesyndrome.net

1,2,3,4,6,8,9

Coffin-Lowry Syndrome

COFFIN-LOWRY SYNDROME FOUNDATION

Mary C. Hoffman

675 Kalmia PL NW

Issaquah, WA 98027

(425) 427-0939

CoffinLowry@gmail.com

www.clsf.info

1,2,3 English

Coffin-Siris Syndrome

See: Ectodermal Dysplasias

Cogan's Syndrome

See: Autoimmune Disorders

Colitis

See: Crohn Disease and Colitis

Coloboma

See: Visual Impairments

Colon Cancer, Hereditary

SIDNEY KIMMEL COMPREHENSIVE CANCER CENTER

Kathy Romans

Johns Hopkins University

550 N Broadway Suite 108

Baltimore, MD 21231

(410) 955-3875

(410) 955-6787

hccregistry@jhmi.edu

www.hopkinskimmelcancercenter.org

1,2,3,9

Complex Regional Pain Syndrome

See: Reflex Sympathetic Dystrophy Syndrome

Congenital Adrenal Hyperplasia (CAH)

CARES FOUNDATION INC

Dina Matos 2414 Morris Ave

Suite 110

Union, NJ 07083

(908) 364-0272

(866) 227-3737

(908) 686-2019

dina@caresfoundation.org

www.caresfoundationorg

1,2,3,4,5,6,7,8

Congenital Lipoid Hyperplasia

See: Adrenal Disorders

Congenital Sensory Neuropathy with Anhidrosis

See: Familial Dysautonomia

Conradi-H nermann Syndrome

See: Growth Disorders; Ichthyosi

Cooley Anemia/Thalassemia major

COOLEY'S ANEMIA FOUNDATION, INC

Eileen Scott

330 7th Ave, Suite 200

New York, NY 10001

(212) 279-8090

(212) 279-5999

eileens@thalassemia.org

www.thalassemia.org

1,2,3,4,5,6,7,8 English, Asian, limited Spanish and Greek material

THALASSEMIA FOUNDATION OF CANADA

Helen Ziavras

338 Falstaff Ave, Suite 204

North York, ON M6L 2E8

(416) 242-THAL8425

info@thalassemia.ca

1,2,3,4,5,6,8 English spoken, some publications in French

THALASSEMIA ACTION GROUP

Jesal Kapasi

330 Seventh Ave., #200, New York, NY 10001

(212) 279-8090

(212) 279-5999

www.cooleysanemia.org

1,2

Copper Deficiency, X-Linked

See: Menkes Disease

Copper Malabsorption XLinked

See: Menkes Disease

Cornelia de Lange Syndrome

CORNELIA DE LANGE SYNDROME FOUNDATION

Marie Malloy

302 W Main St #100

Avon, CT 06001

(800) 753-2357

(860) 676-8166

(860) 676-8337

info@cdlsusa.org

www.CdLSusa.org

1,2,3,6,7,8 English; Spanish publications

Corpus Callosum Disorders

See: Agenesis of the Corpus Callosum; Aicardi Syndrome

COX Deficiency

See: Mitochondrial Disorders

Craniocarpotarsal Dystrophy

See: Freeman-Sheldon Syndrome

Cranioectodermal Syndrome

See: Ectodermal Dysplasias

Craniofacial Disorders

AMERIFACE

Debbie Oliver

PO. Box 751112

Las Vegas, NV 89136-1112

(888) 486-1209

(702) 769-9264

(702) 341-5351

info@ameriface.org

www.ameriface.org

1,2,3,4,5,6,7 English

CHILDREN'S CRANIOFACIAL ASSOCIATION

Annie Reeves

13140 Coit Road, Suite 517

Dallas, TX 75240

(800) 535-3643

(214) 570-9099

(214) 570-8811

areeves@ccakids.com

www.ccakids.org

1,2,3,4,6,7

CRANIOSYNOSTOSIS AND POSITIONAL PLAGIOCEOHALY SUPPORT INC. (CAPPS

Jennifer Pitchke

6905 Xandu Court

Fredericksburg, VA 22407

(540) 786-9563

(845) 454-5902

Plagio@optonline.net

www.cappskids.org/

1,2,5,7 English

FACES: THE NATIONAL CRANIOFACIAL ASSOCIATION

Lynne Mayfield, President

PO. Box 11082

Chattanooga, TN 37401

(423) 266-1632

(800) 332-2373

faces@faces-cranio.org

www.faces-cranio.org/

1,2,3,4

FORWARD FACE: HELPING CHILDREN WITH

CARNIOFACIAL CONDITIONS

Avery O'Callaghan Ph.D.

333 East 30th Street, Lobby Unit

New York, NY 10016

(212) 263-6656

(212) 263-7534

info@myface.org

www.forwardface.org

1,4

LET'S FACE IT USA

Patricia Anderson

University of Michigan School of

Dentistry/Dentistry Library

1011 N. University

Ann Arbor, MI 48109-1078

(734) 936-1403

(734) 936-1404

faceit@umich.edu

www.dent.umich.edu/faceit

1,2 English

TENNESSEE CRANIOFACIAL CENTER

975 E Third St

Chattanooga, TN 37403

(423) 778-7000

Mickey.Milita@erlanger.org

www.erlanger.org/

1,2,4,7 Financial assistance for medical-related travel

Craniofacial, Facial Reconstruction

MYFACE

Carolyn Spector

333 East 30th Street, Lobby Office

New York, NY 10016

(212) 263-6656

(212) 263-7534

info@myface.org

www.myface.org

1,2,3,5,8 English, Spanish, Mandarin

Craniosynostosis

See: Craniofacial Disorders

Cri Du Chat Syndrome

5P-SOCIETY

Laura Castillo

PO. Box 268

Lakewood, CA 90714

(888) 970-0777

(562) 804-4506

(562) 920-5240

lc5pminussociety@aol.com

www.fivepminus.org

1,2,3,6

Crib Death

See: Sudden Infant Death Syndrome (SIDS)

Crigler-Najjar

See: Liver Disease and Transplant

Crohn Disease & Colitis

CCFA: CROHN'S & COLITIS FOUNDATION OF AMERICA

Erin Stoeber

733 Third Avenue, Suite 510

New York, NY 10017

(800) 932-2423

(416) 920-5035

(212) 779-3557

cfc@ccfc.ca www.ccfc.ca

1,2,4,5,6,7,8,9 English, French

Crouzon Disease

See: Craniofacial Disorders

Curly Hair-AnkyloblepharonNail 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

10520 W Bluemound Road, Suite #106

Milwaukee, WI 53226

(414) 342-7880

(414) 342-8980

cvsa@cvsaonline.org

www.cvsaonline.org

1,2,3,4,5,6,7,8 English, Spanish

Cystic Fibrosis

CYSTIC FIBROSIS CANADA

Diana Ginsberg

2221 Yonge St, Ste 601

Toronto, On M4S 2B4

(800) 378-2233

(416) 485-9149

(416) 485-0960

info@cysticfibrosis.ca

www.cysticfibrosis.ca

1,2,5,8 English, French

CYSTIC FIBROSIS FOUNDATION

Shirley Windsor

6931 Arlington Road, 2nd floor

Bethesda, MD 20814

(800) 344-4823

(301) 951-4422

(301) 951-6378

www.cff.org

1,2,3,4,5,6,7,8,9 English Spanish

Cystinosis

See: Kidney Disorders

Cystinosis, Fanconi Syndrome

CYSTINOSIS RESEARCH NETWORK

Christy Greeley

302 Whytegate Court

Lake Forest, IL 60045

(866) 276-3669

(847) 735-0471

(847) 235-2773

info@cystinosis.org

www.cystinosis.org

1,2,3,6,7,8 English

Cystinuria

CYSTINURIA SUPPORT NETWORK

Jann Ledbetter

21001 NE 36th St

Sammamish, WA 98074

(425) 868-2996

(425) 897-0675

cystinuria@aol.com

www.cystinuria.com

2,3,4,9 English

Cytochrome C Oxidase (COX) Deficiency

See: Lactic Acidosis, Mitochondrial Disorders

Cytomegalovirus (CMV)

NATIONAL CONGENITAL CMV DISEASE REGISTRY

Gail J Demmler-Harrison MD

Texas Children's Hospital

Feigin Center Suite 1150

1102 Bates Street

Houston, TX 77030

(832) 824-4387

(832) 825-4347

cmv@bcm.edu

www.bcm.tmc.edu/pedi/i nfect/cmv

1,2,3,4,6,7,9 English, some Spanish

Dandy-Walker syndrome

Dandy Walker Syndrome Network

Desiree Fleming

5030 142nd Path W

Apple Valley, MN 55124

(952) 423-4008

2,3,4 English

Darier Disease

See: Ichthyosis

De Barsey Syndrome

See: Connective Tissue Disorders

De Barsy-Moens-Diercks Syndrome

See: Connective Tissue Disorders

De Morsier Syndrome

See: Septo-Optic Dysplasia

Deaf and Hard of Hearing

NATIONAL ASSOCIATION OF THE DEAF

Howard Rosenblum

8630 Fenton Street, Suite 820

Silver Spring, MD 30910

(301) 587-1788

(301) 587-1791

nad.info@nad.org

www.nad.com

1,2,3,4,6,7 American Sign Language

AMERICAN ASSOCIATION OF THE DEAF-BLIND

Elizabeth Spiers

PO. Box 2831

Kensington, MD 20891

(301) 495-4403

(301) 495-4402

(301) 495-4404

aadb-info@aadb.org

www.aadb.org

1,2,6,7 English

THE NATIONAL CONSORTIUM ON DEAF-BLINDNESS

Gail Leslie

Teaching Research Institute

345 N. Monmouth Ave.

Monmouth, OR 97361

(503) 838.8754

(800) 854-7013

(503) 838-8150

www.nationaldb.org/

1,2,4

Deafness

See: Hearing Impairments

Debrancher Enzyme Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Decarboxylicaciduria

See: Fatty Oxidation Disorder

Decerebrate Dementia

See: Subacute Sclerosing Panencephalitis

Dejerine Sottas Disease

See: Muscular Dystrophy

Dejerine-Landouzy

See: Muscular Dystrophy; FacioScapulo-Humeral Muscular Dystrophy

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

Dermatomegaly

See: Connective Tissue Disorders

Dermatomyositis

See: Arthritis; Muscular Dystrophy; Myositis

Dermoodontodysplasia

See: Ectodermal Dysplasias

Dermotrichic Syndrome

See: Ectodermal Dysplasias

Developmental Disabilities

See: Intellectual Disability

Diabetes inspidus

See: Autoimmune Disorders

Diabetes Mellitus

AMERICAN DIABETES ASSOCIATION

Center for Information and Community Support

1701 N. Beauregard St.

Alexandria, VA 22311

(703) 549-1500

(800) 3423-2383

(703) 549-6995

AskADA@diabetes.org

www.diabetes.org

1,2,3,4,5,6,7,8,9 English, Spanish

Diabetes Mellitus

CANADIAN DIABETES ASSOCIATION NATIONAL OFFICE

1400-522 University Ave

Toronto, ON M5G 2R5

(800) BAN-TING2268464

(416) 363-3373

guidelines@diabetes.ca

www.diabetes.ca

2,4,5,6,7,8 English, French

DiGeorge Sequence

See: Genetic Disorders

Digestive Disorders

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

Digestive Dysmotility

See: Intestinal PseudoObstruction Syndrome

Dimorsier Syndrome

See: Growth Disorders

Discoid Lupus

See: Autoimmune Disorders

DisordersMyositis Ossificans

See: Fibrodysplasis Ossificans Progressiva

Down Syndrome

ACDS (ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME)

Michael M. Smith

4 Fern Place

Plainview, NY 11803

(516) 933-4700,204

(516) 933-9524

msmith@acds.org

WWW.ACDS.ORG

1,2,3,4

CANADIAN DOWN SYNDROME SOCIETY

Kirk Crowther

2003 14 Street NW, Suite 103

Calgary, AB T2M 3N4

(800) 883-5608

(403) 270-8500

(403) 270-8291

info@cdss.ca

www.cdss.ca

1,2,3,4,5,6,7

FOUNDATION FOR CHILDREN WITH DOWN SYNDROME

Aleta R. Capel

1502 S Michigan Ave. Bldg. #12

Suite# 3

Joplin, MD 64804

(417) 626-8603

travis7@cableone.net

www.volunteermatch.org/search/org31782.jsp

2,4,7,8,9 English, Spanish

INTERNATIONAL MOSAIC DOWN SYNDROME ASSOCIATION (IMDSA)

Brandy Hellard

P.O. Box 354

Trenton, OH 45067

(513) 571-4186

(888) MDS-LINK

(775) 295-9373

president@imdsa.org

www.imdsa.org

1,2,3,4,6,7,8,9 English, Spanish, Portuguese, all correspondence can be translated

KENNEDY WILLIS CENTER AT PATHFINDER VILLAGE

Helen E. Stepowany

3 Chenango Rd.

Edmeston, NY 13335-2314

(607) 965-8377 ext 117

(607) 965-8655

info@pathfindervillage.org

www.pathfindervillage.org

1,2,3,4,6,7

NATIONAL DOWN SYNDROME CONGRESS

David Tolleson

30 Mansell Court, Suite 108

Roswell, GA 30076

(800) 232-6372

(770) 604-9500

(770) 604-9898

info@ndsccenter.org

www.ndsccenter.org

1,2,3,4,5,6,7 Spanish

NATIONAL DOWN SYNDROME SOCIETY

Vanessa Quick

666 Broadway, 8th Floor

New York, NY 10012

(800) 221-4602

(212) 763-4364

(212) 979-2873

info@ndss.org

www.ndss.org

1,2,3,4,5,6,7 English, Spanish

Down Syndrome, Acid Maltase Deficiency

C.H.A.N.G.E.S DOWN SYNDROME SUPPORT GROUP

Donna Greenley

291 Charlotte Street, Unit 3

Peterborough, ON K9J 2V6

(705) 749-6695

(866) 656-9677

(705) 749-5864

www.aboutchanges.com

Dual Sensory Impairments

See: Deaf-Blind

Dubowitz Syndrome

DUBOWITZ SYNDROME PARENT SUPPORT NETWORK

Ruth Kimberly

P.O. Box 2441

Vincennes, IN 47591

(812) 886-6875

(812) 886-1128

jkearns@charter.net

www.dubowitz.org

2,4,6,7 English

Duchenne, Muscular Dystrophy

PARENT PROJECT MUSCULAR DYSTROPHY

Ryan Fischer

401 Hackensack Ave, 9th Floor

Hackensack, NJ 7601

(201) 250-8440

(800) 714-5437

(201) 944-9987

pat@parentprojectmd.org

www.parentprojectmd.org

1,2,3 English, Spanish

Dwarfism

BILLY BARTY FOUNDATION

Lisa Luken

10222 Crosby Road

Harrison, OH 45030

(513) 738-4428

(513) 385-2468

info@billybartygolfclassic.com

LITTLE PEOPLE OF AMERICA

Joanna Campbell

250 El Camino Real, Suite 211

Tustin, CA 92780

(714) 368-3689

(888) LPA-2001

(714) 368-3367

info@lpaonline.org

www.lpaonline.org/

1,2,3,4,5,6,2 Spanish materials

KNIEST SED GROUP

Cecilie

support@ksginfo.org

1,2,3,4,6,7,9 English

Dysautonomia, Familial

See: Familial Dysautonomia

Dysautonomia, Autonomic Dysfunction

NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION (NDRF)

Daniel P. Smith

P.O. Box 301

Red Wing, MN 55066-0301

(651) 267-0525

(651) 267-0524

ndrf@ndrf.org

www.ndrf.org

1,2,4,6,7,8,9 English

Dysgenesis of the Corpus Callosum

See: Agenesis of the Corpus Callosum

Dyskeratosis, Congenital

See: Ectodermal Dysplasias

Dyslexia, Visual Impairments

DYSLEXIA RESEARCH INSTITUTE

Dr. Patricia K. Hardman

5246 Centerville Rd

Tallahassee, FL 32309

(850) 893-2216

(850) 893-2440

dri@talstar.com

www.dyslexia-add.org

7,9

RECORDING FOR THE BLIND & DYSLEXIC

20 Roszel Rd

Princeton, NJ 08540

(800) 803-7201

(800) 221-4792

(609) 987-8116

www.rfbd.org

2; extensive lending library of academic textbooks

Dysostosis, Acrofacial, Nager Type

See: Nager and Miller Syndromes

Dysostosis, Mandibulofacial

See: Nager and Miller Syndromes; Treacher Collins Syndrome

Dysostosis, Metaphyseal, Type B IV

See: Shwachman Syndrome

Dysostosis, Postaxial Acrofacial

See: Nager and Miller Syndromes

Dysplastic Angiectasia, Congenita

See: Klippel-Trenaunay Syndrome

Dystonia

DYSTONIA MEDICAL RESEARCH FOUNDATION, CANADA

Janet L. Hieshetter

One East Wacker Drive, Suite 2810

Chicago, IL 60601

(312) 755-0198

(312) 803-0138

dystonia@dystonia-foundation.org

www.dystonia-foundation.org

1,2,3,5,6,7,8 English, French

Eaton-Lambert Syndrome

See: Muscular Dystrophy

Ectrodactyly-Ectodermal Dysplasia-Cleft Lip/Palate (EEC) Syndrome

See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias

Education, Literacy, Learning Disabilities, Learning Differences, Dyslexia

THE INTERNATIONAL DYSLEXIA ASSOCIATION

40 York Rd.4th Floor

Baltimore, MD 21204

(410) 296-0232

(800) 222-2123

(410) 321-5069

info@interdys.org

eida.org

8,9 Spanish

EEC Syndrome

See: Cleft Palate; Craniofacial Disorders; Ectodermal Dysplasias

Ehlers-Danlos Syndrome

EHLERS-DANLOS NATIONAL FOUNDATION

Shane Robinson

7918 Jones Branch Dr, Suite 300

Suite 1601, South Tower

McLean, VA 22102

(703) 506-2892

(703) 506-3266

ednfstaff@ednf.org

www.ednf.org

1,2,3,6,7,8

Ehlers-Danlos Syndrome

EHLERS-DANLOS NATIONAL FOUNDATION

1760 Old Meadow Rd, Suite 500

McLean, VA 22102

(703) 506-2892

(703) 506-3266

ednfstaff@ednf.org

www.ednf.org

Eintein 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 and Epilepsy, Chronic

See: Rasmussen Syndrome

Encephalitis, Chronic Localized

See: Rasmussen Syndrome

Encephalitis, Rasmussen

See: Rasmussen Syndrome

Encephalofacial Angiomatosis

See: Sturge-Weber Syndrome

Encephalomyelopathy

See: Lactic Acidosis; Mitochondrial Disorders

Encephalomyeloradiculopathy, Acute isseminated

See: Guillain-Barr Syndrome

Encephalotrigeminal Angiomatosis

See: Sturge-Weber Syndrome

Enchondromatosis, Enchondroses

See: Ollier Disease

Endocardial Fibroslastosis

See: Heart Disorders

Enteropathy, GlutenSensitive

See: Celiac Disease; Celiac Sprue; Gluten Intolerance

Eosinophilic Granuloma

See: Histiocytosis

Epicanthus Inversus

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

Epidermolysis Bullosa, Dystrophic

DEBRA OF AMERICA, INC.

Brett Kopelan ED

75 Broad St, Suite 300

New York, NY 10004

(212) 868-1573

(866) 332-7276

(212) 868-9296

staff@debra.org

www.debra.org

1,2,3,5,6,7,8,9 English

Epidermolytic Hyperkeratosis

See: Ichthyosis

Epilepsy

AMERICAN EPILEPSY SOCIETY

M. Suzanne Berry

342 North Main St.

West Hartford, CT 06117-2507

(860) 586-7505 ext 510

(860) 586-7550

sberry@aesnet.org

www.aesnet.org

1,4,6,8 English, Spanish

EPILEPSY CANADA

Jaime Weatherbee

2255B Queen St E Suite 336

Toronto, ON M4E 1G3

(877) 734-0873

(705) 730-2396

(647) 777-8416

jaime@epilepsy.ca

www.epilepsy.ca

2,4,6,7,8,9 English, French

EPILEPSY FOUNDATION

NATIONAL OFFICE

Thomas Buckley

8301 Professional Place--East

Suite 200

Landover, MD 20785-2353

(866) 748-8008

(800) 332-1000

(301) 577-2684

info@efa.org

www.epilepsy.com

1,2,3,4,5,6,7,8,9 English, Spanish

Epiloia

See: Tuberous Sclerosis

Erb/Duchenne Palsy

See: Erb's Palsy

Erdheim-Chester Disease

See: Histiocytosis

Erythroblastophthisis

See: Anemia, Aplastic

Erythroblastotic Anemia of Childhood

See: Cooley Anemia; Thalassemia Major

Erythrohepatic Protoporphyria

See: Liver Disorders; Porphyria

Erythroid Hypoplasia, Constitutional

See: Anemia, Diamond-Blackfan

Erythroid Hypoplasia, constitutional

See: Cooley Anemia; Thalassemia Major

Erythrokeratodermias

See: Ichthyosis

Erythrophagocytic Lym phohistiocytosis, Familial

See: Histiocytosis

Esophageal Atresia

See: VACTERL Association

Essential Tremor

INTERNATIONAL ESSENTIAL TREMOR FOUNDATION

Catherine S. Rice

PO. Box 14005

Lenexa, KS 66285-4005

(913) 689-2732

(888) 387-3667

(913) 341-1296

info@essentialtremor.org

www.essentialtremor.org

1,2,4,7,8 Spanish

Evans Syndrome

See: Autoimmune Disorders; Neutropenia

Exomphalos-MacroglossiaGigantism (EMG) Syndrome

See: Beckwith-Wiedemann Syndrome

Exostoses, Multiple Hereditary (MHE, HME), Osteochondromas

MHEAND ME

Susan Wynn

P.O. Box 651

Pine Island, NY 10969-0651

(845) 981-7157

mheandme@yahoo.com

www.mhecoalition.org

1,2,3,4 English, Spanish,

THE MHE COALITION

Chele Zelina

6783 York Road, Apt. #104

Parma Heights, OH 44130-4596

(440) 842-8817

(440) 821-5038

CheleZ1 @yahoo.com

www.mhecoalition.org

1,7,6,8,9 Literature-Spanish, Italian, German, Japanese

Fabry Disease

FABRY SUPPORT & INFORMATION GROUP

Jack Johnson

108 NE 2nd Street, Suite C

PO. Box 510

Concordia, MO 64020

(660) 463-1355

(866) 30F-ABRY

(660) 463-1356

info@fabry.org

www.fabry.org

1,9 English

INTERNATIONAL CENTER FOR FABRY DISEASE

Dana Doheny

Mount Sinai School of Medicine

Department of Genetics and

Genomic Sciences

Box 1498, Fifth Avenue at

100th Street

New York, NY 10029

(212) 659-6780

(212) 265-6779

(212) 659-6779

fabry.disease@mssm.edu

1,2,4,8,9 English, Spanish

KENNEDY KRIEGER INSTITUTE DOWN SYNDROME CLINIC

George Capone MD

707 N. Broadway

Baltimore, MD 21205

(888) 554-2080

(443) 923-9400

(443) 923-9400

intake@kennedykrieger.org

www.kennedykrieger.org

1,2,4,8,9 English, Spanish

Facial Disfigurements

ABOUTFACE INTERNATIONAL

1057 Steeles Ave. West

PO. Box 702

North York, ON M2R 3X1

(416) 597-2229, 21

(800) 665-3223

(416) 597-8494

info@aboutface.ca

www.aboutface.ca

1,2,3,4,6,7,9 English, French

Facio-Auriculo-Vertebral Anomaly

See: Goldenhar Syndrome

Facio-Cardio-Cutaneous Syndrome

See: Heart Disorders; Ichthyosis

FacioScapuloHumeral Muscular Dystrophy

FSH SOCIETY, INC.

Nancy Van Zant

64 Grove Street

Watertown, MA 02472

(617) 658-7878

(617) 658-7879

nancy.vanzant@fshsociety.org

www.fshsociety.org

1,2,3,4,5,6,7,8,9 English, Spanish

Familial Adenomatous Polyposis

See: Colon Cancer, Hereditary

Familial Ataxia

See: Ataxia; Friedreich Ataxia

Familial Dysautonomia

DYSAUTONOMIA FOUNDATION, INC.

David Brenner

315 West 39th Street, Suite 701

New York, NY 10018

(212) 279-1066

(212) 279-2066

info@famdys.org

www.familialdysautonomia.org

1,2,5,6,7,8 English

Familial Juvenile Polyposis

See: Colon Cancer, Hereditary

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: Metabolic Disords

Female Sex Chromosome Disorders

See: Turner Syndrome

Fetal Alcohol Spectrum Disorders (FASD)

NATIONAL ORGANIZATION ON FETAL ALCOHOL SYNDROME (NOFAS)

Andy Kachor

1200 Eton Court, N.W. Third Floor

Washington, DC 20007

(202) 785-4585, 213

(800) 66N-OFAS

(202) 466-6456

Info@nofas.org

www.nofas.org

1,2,4,7 English, Spanish

FAMILY EMPOWERMENT NETWORK (FEN)

Raina Zwadzich

University of Wisconsin-Madison

School of Medicine and Public

Health

Department of Family Medicine

1100 Delaplaine Court

Madison, WI 53715

(608) 262-6590

(800) 462-5254

(608) 263-5813

Family.EmpowermentNetwork@fa

mmed.wisc.edu

www.pregnancyandalcohol.org

1,2,3,4,6,7,9 English

THE CENTER FOR ALCOHOL AND DRUG RESOURCES, INC.

A program of Children's Aid and Family Services

Chanel Dupree

241 Main Street Suite 600

Hackensack, NJ 7601

(201) 740-7069

(201) 488-8724

thecenter@cafsnj.org

www.tcadr.org

1,2,4,6 English

THE FETAL ALCOHOL SYNDROME FAMILY RESOURCE INSTITUTE

Vicky McKinney

PO. Box 2525

Lynnwood, WA 98036

(253) 531-2878

(800) 999-3429

(425) 640-9155

vicfas@hotmail.com

www.fetalalcoholsyndrome.org

1,2,3,4,5,6,7,9

Fetal Face Syndrome

See: Robinow Syndrome

Fetal Iritis Syndrome

See: Norrie Disease

FG Syndrome

FG SYNDROME FAMILY ALLIANCE, INC.

Laurie Garza

946 NW Circle Blvd. #290

Corvallis, OR 97330

(617) 577-9050

info@fg-syndrome.org

www.fgsyndrome.org/

Fibrous Dysplasia, Monostotic

See: McCune-Albright Syndrome

First and Second Branchial Arch Syndrome

See: Goldenhar Syndrome

Fischer Syndrome

See: Guillain-Barr 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

THE FOOD ALLERGY AND ANAPHYLAXIS NETWORK

11781 Lee Jackson Hwy.

Suite 160

Fairfax, VA 22033-3309

(800) 929-4040

(703) 691-2713

faan@foodallergy.org

www.foodallergy.org

1,2,6,7,9 English, Spanish

Forbes Disease

See: Glycogen Storage Diseases; Muscular Dystrophy

Fragile X Syndrome

FRAXA RESEARCH FOUNDATION

Katie Clapp

10 Prince Place, Suite 203

Newburyport, MA 1950

(978) 462-1866

info@fraxa.org

www.fraxa.org

1,2,3,4,5,7,8,9 English

NATIONAL FRAGILE X FOUNDATION

Linda Sorensen

2100 M St. NW Suite170 Box 302

Washington, DC 20037

(800) 688-8765

(202) 747-6210

(202) 747-6208

natlfx@fragilex.org

www.FragileX.org

1,2,3,4,5,6,7,8,9 English, Spanish

Francheschetti-Klein Syndrome

See: Treacher Collins Syndrome

FRAXA

See: Fragile X Syndrome

Freeman-Sheldon Syndrome

FREEMAN-SHELDON PARENT SUPPORT GROUP

Joyce Dolcourt

509 Northmont Way

Salt Lake City, UT 84103

(801) 364-7060

fspsg@mail.burgoyne.com

http://www.fspsg.org/

2,3,4,7,9 English

Friedreich Disease

See: Ataxia; Friedreich Ataxia

Friedreich Tabes

See: Ataxia; Friedreich Ataxia

Fucosidosis

See: Tay-Sachs Disease

Fuller-Albright Syndrome

See: McCune-Albright Syndrome

Fulminating Hyperpyrexia

See: Malignant Hyperthermia

Galactose-1-Phosphate Uridyl Transferase Deficiency

See: Galactosemi

Galactosemia

GALACTOSEMIA FOUNDATION

Scott Shepard

P.O. Box 1512

Deerfield Beach, FL 33443

(866) 900-7421

scott.shepard@galactosemia.org

www.galactosemia.org

1,2,3,4,6,7,8 English

Gardner Syndrome

See: Colon Cancer, Hereditary; Polyposis

Gastrointestinal Cancer

See: Colon Cancer, Hereditary; Polyposis

Gastrointestinal Disorders

THE OLEY FOUNDATION

Lisa Metzger

43 New Scotland Ave, MC 28

Albany Medical Center

Albany, NY 12208

(800) 776-OLEY

(518) 262-5079

(518) 262-5528

bishopj@mail.amc.edu

www.oley.org

1,2,3,4,6,7 English

Gaucher Disease

NATIONAL GAUCHER FOUNDATION

Rhonda Buyers

2227 Idlewood Road, Suite 6

Tucker, GA 30084

(800) 504-3189

(770) 934-2910

(770) 934-2911

ngf@gaucherdisease.org

www.gaucherdisease.org

1,2,3,4,5,6,7,8, English, Spanish, Russian

Genee-Wiedemann Syndrome

See: Nager and Miller Syndrome

Genetic Disorders

GENETIC ALLIANCE AUSTRALIA

(formerly known as Association of Genetic Support of Australasia Inc.--AGSA)

Dianne Petrie

C/- Garvan Institute of Medical

Research, L6, 384 Victoria Street, Darlinghurst Australia, NSW 2010

(610) 292-95 8359

(610) 292-95 8181

dianne@agsa-geneticsupport.org.au

www.agsa-geneticsupport.org.au

1,2,3,4,7 Genetic factsheets, newsletters, resource info.annual

Genitalia, Ambiguous

AMBIGUOUS GENITALIA SUPPORT NETWORK (AGSN)

P.O. Box 313

Clements, CA 95227

209-727-0313

2,3,4 English

Gilford Syndrome

See: Progeria

Gingival Fibromatosis and Hypertrichosis

See: Ectodermal Dysplasias

Giroux-Barbeau Syndrome

See: Ichthyosis

Glaucoma

GLAUCOMA RESEARCH FOUNDATION

251 Post St. Suite 600

San Francisco, CA 94108

(800) 826-6693

(415) 986-3162

(415) 986-3763

question@glaucoma.org

www.glaucoma.org

1,2,4,6,7,8 English, Spanish

Glucosyl Cerebroside Lipidosis

See: Gaucher Disease

Glutaric Aciduria, Type I

IOGA

Cay Welch 9638 Rt 22 Highway

Blairsville, PA 15717

(724) 459-0179

mmetil@verizon.net

1,2,3,4,6,8,9 English, Spanish

Glutaricaciduria I

See: Glutaric Aciduria, Type I

Glutaricaciduria II

See: Acidemia, Organic; Lactic Acidosis

Gluten Intolerance

GLUTEN INTOLERANCE GROUP

Nancy Kloberdanz, Executive

Office Assistant

31214 124th Ave SE

Auburn, WA 98092-3667

(253) 833-6655 ext 103

(253) 833-6675

nancy.kloberdanz@gluten.org

www.gluten.org

1,2,3,4,5,6,7,8,9 English

Gluten-Sensitive Enteropathy

See: Celiac Disease; Celiac Sprue; Gluten Intolerance

Glycogen Storage Diseases

ASSOCIATION FOR GLYCOGEN STORAGE DISEASE

Hollie Swain

P.O. Box 896

Durant, IA 52747

(563) 514-4022

(563) 514-4022

info@agsdus.org

www.agsdus.org

1,2,3,4,6,8

Glycogenoses

See: Glycogen Storage Diseases

Glycosphingolipidoses

See: Tay-Sachs Disease

Goldenhar Syndrome

See: Craniofacial Disorders

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

CHRONIC GRANULOMATOUS DISEASE ASSOCIATION INC

Mary Hurley

2616 Monterey Rd

San Marino, CA 91108

(626) 441-4118

cgda@socal.rr.com

www.cgdassociation.org

2,3,4,6,7,8,9 English

Graves Disease

See: Thyroid Disorders

Groenblad-Strandberg Syndrome

See: Pseudoxanthoma Elasticum (PXE)

Growth Disorders

HUMAN GROWTH FOUNDATION

Patricia Costa

997 Glen Cove Ave Suite #5

Glen Head, NY 11545

(800) 451-6434

(516) 671-4041

(516) 671-4055

www.hgfound.org/

1,2,3,4,5,6,7,8 English

Growth Retardation, Intrauterine

See: Growth Disorders

Growth Retardation-Alopecia-Pseudoanodontia-optic Atrophy

See: Ectodermal Dysplasias

Guerin-Stern Syndrome

See: Arthrogryposis Multiplex Congenita

Guillain-Barre Syndrome

GBS/CIDP FOUNDATION INTERNATIONAL

Holly Baidling

The Holly Building

104-1/2 Forrest Avenue

Narberth, PA 19072

(866) 224-3301

(866) 224-3301

(610) 667-7036

www.gbs-cidp.org

GBS/CIDP FOUNDATION OF CANADA

Donna Hartlen

GBS/CIDP Foundation of Canada, 3100 Garden St., P.O. Box 80060 RPO Rossland Garden, Whitby, ON L1R 0H1

(647) 560-6842

info@gbscidpcanada.org

gbs-cidp.org/canadList

1,2,3,4,5,6,2 English, French

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: Reflex Sympathetic Dystrophy Syndrome

Harlequin Ichthyosis

See: Ichthyosis

Hayden Syndrome

See: Ectodermal Dysplasias

Hay-Wells Syndrome

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

Head Injury

See: Brain Injury

Health

MATERNAL AND CHILD HEALTH LIBRARY (MCH LIBRARY) AT GEORGETOWN UNIVERSITY

Susan Brune Lorenzo, MLS

Box 571272

Washington, DC 20057-1272

(877) 624-1935

(202) 784-9770

(202) 784-9777

smblorenzo@gmail.com

www.mchlibrary.org

NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS

Mary Fete, Executive Director

6 Executive Drive, Suite 2

Fairview Heights, IL 62208-1360

(618) 566-2020

(618) 566-4718

info@nfed.org

www.nfed.org

1,2,3,4,6,7,8,9 English

Hearing Impairments

ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING (A G BELL)

3417 Volta Place NW

Washington, DC 20007

(202) 337-5220

(202) 337-5221

(202) 337-8314

info@agbell.org

www.agbell.org

1,2,3,4,5,6,7 Spanish/Scholarship program

AMERICAN SOCIETY FOR DEAF CHILDREN

Cheri Dowling

2047

800 Florida Avenue, NE

Washington, DC 20002-3695

(800) 942-2732

(443) 277-8899

asdc@deafchildren.org

www.deafchildren.org

1,2,3,4,6, English

AMERICAN SPEECH-LANGUAGE, HEARING ASSOCIATION

2200 Research Blvd

Rockville, MD 20850-3289

(301) 296-5700

(800) 498-2071

(301) 296-8590

actioncenter@asha.org

www.asha.org

1,2,4,5,6,7,8

AUDITORY-VERBAL INTERNATIONAL, INC. (AVI)

Scott Smiley

2121 Eisenhower Ave., Suite 402, Alexandria, VA 22314

(703) 739-1049

(703) 739-0874

(703) 739-0395

audiverb@aol.com

www.auditory-verbal.org

GALLAUDET UNIVERSITY

Dan Wallace

800 Florida Avenue, NE

Washington, DC 20002

(202) 651-5000

(202) 651-5704

public.relations@gallaudet.edu

gallaudet.edu/

2,3,4,5,6,8,9 English

Hearing Impairments

Hearing Health Foundation

Andrea Boidman

363 7th Ave, 10th Floor

New York, NY 10001-3904

(212) 257-6140

(866) 454-3924

(212) 257-6139

info@hearinghealthfoundation.org

www.hearinghealthfoundation.org

1,2,4,7,8

LEAD LINE

House Ear Institute

James D. Boswell

2100 W Third St, 5th Fl

Los Angeles, CA 90057

(213) 989-6701

(213) 989-7473

saugustine@hei.org

www.hei.org

1,2,3 English, Spanish

SELF HELP FOR HARD OF HEARING PEOPLE/COCHLEAR IMPLANT ASSOCIATION INC.

Terry Portis

7910 Woodmont Ave, Suite 1200

Bethesda, MD 20814

(301) 657-2248

(301) 913-9413

www.hearingloss.org

1,2,3,4,5,6,7 English

TELECOMMUNICATIONS FOR THE DEAF AND HARD OF HEARING, INC (TDI)

Claude Stout

8630 Fenton Street, Suite 121

Silver Spring, MD 20910-3803

(301) 563-9112

info@TDIforAccess.org

www.TDIforAccess.org

1,2,3,4,6,7 English, American Sign Language

THE LEARNING TO LISTEN FOUNDATION

4001 Leslie Street

Toronto, ON M2K 1E1

(416) 756-6000

(416) 491-1230

(416) 491-7215

westabro@nygh.on.ca

www.nygh.on.ca

1,2,3,4,6 Auditory-verbal services for children who are deaf

NATIONAL CUED SPEECH ASSOCIATION (NCSA)

Sarina Roffe

1300 Pennsylvania Ave NW

Suite 190-713

Washington, DC 20004

(800) 459-3529

(800) 459-3529

info@cuedspeech.org

www.cuedspeech.org

1,2,3,4,5,6,7 Maximizing communication for children by developing language

Hearing Impairments, Low-Income

THE STARKEY HEARING FOUNDATION; HEAR NOW PROGRAM

6700 Washington Ave. S

Eden Prairie, MN 55344

(800) 328-8602, 2358

(952) 947-4997

nonprofit@starkey.com

www.starkeyhearingfoundation.org

1,2,7 Accepts tax-deductible donations of used hearing aid Hearing Loss

BETTER HEARING INSTITUTE

Carole Rogin

1444 I St., NW, Ste 700

Washington, DC 20005

(202) 449-1100

(202) 216-9646

mail@betterhearing.org

www.betterhearing.com

1,2,4,7 English

HEARING LOSS ASSOCIATION OF AMERICA

7910 Woodmont Ave, Ste 1200

Bethesda, MD 20814

(301) 657-2248

(301) 913-9413

inquiry@hearingloss.org

www.hearingloss.org

1,2,5,6,7

THE CANADIAN HEARING SOCIETY

Karen MacKenzie

271 Spadina Rd

Toronto, ON M5R 2V3

(877) 347-3427

(877) 216-7310

(416) 928-2506

info@chs.ca www.chs.ca

1,2,3,4,5,6,7 English, French

Heart Disease, Stroke

AMERICAN HEART ASSOCIATION

7272 Greenville Ave

Dallas, TX 75231

(214) 373-6300

(800) AHA-USA1

Review.personal.info@heart.org

Spanish

Heart Disorder, Lung Disorder

NATIONAL HEART, LUNG, & BLOOD INSTITUTE INFORMATION CENTER

PO. Box 30105

Bethesda, MD 20824-0105

(301) 592-8573

(800) 877-8339

(301) 592-8563

NHLBIinfo@nhlbi.nih.gov

www.nhlbi.nih.gov

1,2,8 English, Spanish

CHASER: CONGENITAL HEART ANOMALIES, SUPPORT, EDUCATION

Anita Myers

2112 N. Wilkins Rd, Swanton, OH 43558

(419) 825-5575

(419) 825-2880

myer106w@wonder.em.cdc.gov

www.csun.edu/~hcmth011/cnaser/chaser-news.html

1,2,3,4,6,7,8,9 English

Heart Disorders In Children

KIDS WITH HEART; NATIONAL ASSOCIATION FOR CHILDREN'S HEART DISORDERS, INC.

Michelle Rintamaki

1578 Careful Dr

Green Bay, WI 54304

(800) 538-5390

(800) 538-5390

michelle@kidswithheart.org

www.kidswithheart.org

2,3,4,7,9 English and some Spanish

Hemangioma & Vascular Malformations

THE NATIONAL ORGANIZATION OF VASCULAR ANOMALIES (NOVA)

Karla Hall

NOVA 8711 Six Forks Road

PMB 126

Raleigh, NC 27615

(419) 425-1589

(419) 425-1589

jdubiel@aol.com

www.novanews.org

1,2,3,4,5,6,7 English with some Spanish

Hemidysplasia, Unilateral

See: Ichthyosis

Hemifacial Microsomia

See: Goldenhar Syndrome

Hemihypertrophy

See: Beckwith-Wiedeman Syndrome

Hemiplegia, Alternating, Dystonia, seizures

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION (AHCF)

Lynn Egan

2000 Town Center, Suite 1900

Southfield, MI 48075

(650) 365-5798

(650) 796-1910

(650) 365-5436

ahcfoundation@ahckids.org

www.ahckids.org

1,2,3,4,6,7,8,9 English, Google translate for others

Hemiplegia, Hemiplegic Cerebral Palsy, Pediatric Stroke

CHILDREN'S HEMIPLEGIA AND STROKE ASSOCIATION, CHASA

Nancy Atwood

Suite 305, PMB 149

4101 W. Green Oaks

Arlington, TX 76016

(817) 492-4325

info437@chasa.org

www.chasa.org

2,3,4,5,6,7 English

Hemispherectomy

See: Rasmussen Syndrome

Hemolytic Anemia

See: Cooley Anemia

Hemolytic-Uremic Syndrome

See: Kidney Disorders

Hemophagocytic Lymphohistiocytosis

See: Histiocytosis

Hemophilia

NATIONAL HEMOPHILIA FOUNDATION

Richard Metz

116 W. 32nd St., 11th Floor

New York, NY 10001

(212) 328-3700

(212) 328-3777

handi@hemophilia.org

www.hemophilia.org

1,2,5 Spanish materials

WORLD FEDERATION OF HEMOPHILIA

Claudia Black

1425 Rene Levesque Blvd. W.

Suite 1010

Montreal, QC H3G 1T7

(514) 875-7944

(514) 875-8916

wfh@wfh.org

www.wfh.org

1,2,4,6,7 Worldwide referrals, guide for travelers,

Hemorrhagic Nodular Purpura

See: Fabry Disease

Hemorrhagic Telangiectasia, Hereditary (HHT)

HHT FOUNDATION INTERNATIONAL, INC.

Nicole Schaefer

PO. Box 329

Monkton, MD 21111

(410) 357-9932

(410) 357-0655

hhtinfo@hht.org

www.hht.org

1,2,3,4,6,7,8 English and little Spanish

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; Thalassemia Major

Hereditary nonpolyposis colorectal cancer

See: Colon Cancer, Hereditary

Hermansky-Pudlak Syndrome

HERMANSKY-PUDLAK SYNDROME NETWORK INC

Donna Appell

One South Rd.

Oyster Bay, NY 11771-1905

(800) 789-9HPS

(516) 922-4022

(516) 624-0640

info@hpsnetwork.org

www.hpsnetwork.org

1,2,3,6,7,8,9 English, Spanish

Hers Disease

See: Glycogen Storage Diseases; Muscular Dystrophy

Hirschsprung Disease

See: Intestinal PseudoObstruction Syndrome

Histiocytosis

HISTIOCYTOSIS ASSOCIATION

Jeffrey M. Toughill

332 North Broadway

Pitman, NJ 8071

(856) 589-6606

(856) 589-6614

info@histio.org

www.histio.org

1,2,3,4,6,8,9 English/Spanish

HIV

See: AIDS

Hodgkin Disease

See: Leukemia

Holoprosencephaly

THE CARTER CENTERS FOR BRAIN RESEARCH IN HOLOPROSENCEPHALY AND RELATED MALFORMATIONS

Dr. Nancy Clegg

Texas Scottish Rite Hospital for

Children, Department of

Neurology

2222 Welborn St.

Dallas, TX 75219

(214) 559-8411

(214) 559-8383

Nancy.Clegg@tsrh.org

www.carterdatabase.org/hpe

2,3,4,6,7,9 English, some Spanish

Human Immunodeficiency Virus

See: AIDS

Hunter Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Hurler Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Hurler/Scheie Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Hutchinson-Gilford Syndrome

See: Progeria

Hutchinson-Weber-Peutz Syndrome

See: Colon Cancer, Hereditary; Polyposis

Hyberbarics

INTERNATIONAL HYPERBARICS ASSOCIATION

Samir Patel

15810, East Gale Avenue #178, Hacienda Heights, CA 91745

(562) 906-8888

(877) IHA-USA1

studies@ihausa.org

Hydrocephalus

HYDROCEPHALUS ASSOCIATION

Karima Roumila

4340 East West Highway, Suite 905

Bethesda, MD 20814

(888) 598-3789, 14

(301) 202-3811

(301) 202-3813

info@hydroassoc.org

www.hydroassoc.org

1,2,3,4,5,6,7,8 English, Spanish

HYDROCEPHALUS SUPPORT GROUP, INC

Debby Buffa

4340 East West Highway, Suite

905

Bethesda, MD 20814

(301) 202-3811

(888) 598-3789

(301) 202-3813

info@hydroassoc.org

www.hydroassoc.org

1,2,3,4,6,7

NATIONAL HYDROCEPHALUS FOUNDATION

Debbi Fields

12413 Centralia Rd.

Lakewood, CA 90715-1623

(562) 924-6666

562) 716-2188

debbifields@nhfonline.org

www.nhfonline.org

1,2,3,4,5,6,7,8,9 Quarterly newsletter with research information, personal stories and more

THE GUARDIANS OF HYDROCEPHALUS RESEARCH FOUNDATION NATIONAL HEADQUARTERS

Marie Fischetti

2640 E 28 St.

Brooklyn, NY 11235-2473

(718) 743-9650

(718) 743-9650

GHRF2618@aol.com

1,2,4,8

Hydrocephalus, Obstructive

See: Dandy-Walker Syndrome

Hyperammonemia

See: Urea Cycle Disorders

Hyperbilirubinemia

See: Kernicterus

Hypercalcemia Syndrome, Infantile, Idiopathic

See: Williams Syndrome

Hypercalcemia-Supravalvar Aortic Stenosis

See: Williams Syndrome

Hypercystinuria

See: Cystinuria

Hyperglycinemia with Ketoacidosis and Leukopenia

See: Acidemia, Organic

Hyperlexia

AMERICAN HYPERLEXIA ASSOCIATION

Phyllis Kuperman

P.O. Box 335

195 W. Spangler Suite B, Flossmoor, IL 60422

(630) 415-2212

info@hyperlexia.org

www.hyperlexia.org

English

Hyperlipodema

See: Autoimmune Disorders

Hyperoxaluria

See: Oxalosis and Hyperoxaluria

Hypertelorism/Hypospadius Syndromes

See: Opitz Syndrome

Hyperthermia of Anesthesia

See: Malignant Hyperthermia

Hyperthyroid Myopathy

See: Muscular Dystrophy; Thyroid Disorder

Hyperuricemia, Hereditary

See: Lesch-Nyhan Disease

Hyperuricemia Choreoathetosis SelfMutilation Syndrome

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

Hypopigmentation

See: Albinism and Hypopigmentation; Vitiligo

Hypoplasia of the Corpus Callosum

See: Agenesis of the Corpus Callosum

Hypoplastic Anemia

See: Anemia, Aplastic

Hypoplastic Left Heart Syndrome

See: Heart Disorders

Hypospadius/HyperteloriSm 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; TaySachs Disease

Ichthyosiform Erythroderma-Deafness Keratitis

See: Ectodermal Dysplasias

Ichthyosis

FIRST: FOUNDATION FOR ICHTHYOSIS AND RELATED SKIN TYPES

Jean Pickford

2616 N. Broad Street

Colmar, PA 18915

(800) 545-3286

(215) 997-9400

(215) 997-9403

jpickford@firstskinfoundation.org

www.firstskinfoundation.org

1,2,3,4,5,7,8,9 Spanish

Idiopathic Thrombocytopenia Purpura (ITP)

See: Purpura, Idiopathic Thrombocytopenia (ITP)

Idiosyncratic Porphyria

See: Porphyria

Ileostomy

See: Ostomy

Illness, Terminal

CHILDREN'S HOSPICE INTERNATIONAL

500 Montgomery Street, Suite 400

Alexandria, VA 22314

(703) 684-0330

(800) 24C-HLID

(703) 684-0226

Info@CHIonline.org

www.chionline.org

2,4,6

CHILDRENS HOSPICE INTERNATIONAL

Ann Armstrong: Dailey Founding Director

500 Montgomery Street, Suite 400

Alexandria, VA 22314

(703) 684-0330

Info@CHIonline.org

www.chionline.org English

Immune Disorders

IMMUNE DEFICIENCY FOUNDATION

40 W. Chesapeake Ave., Suite 308

Towson, MD 21204

(800) 296-4433

(410) 321-6647

(410) 321-9165

idf@primaryimmune.org

www.primaryimmune.org

1,2,4,6,7,8,9 English, Spanish

Imperforate Anus

See: Anorectal Malformations

Inclusion Body Myostisis

See: Immune Disorders

Incontinence and other Voiding Dysfunctions

SIMON FOUNDATION FOR CONTINENCE

Elizabeth A. LaGro

P.O. Box 815

Wilmette, IL 60091

(847) 23SIMON

(847) 864-9758

bethlagro@simonfoundation.org

http://www.simonfoundation.org/

1,2,4,6,7 English

NATIONAL ASSOCIATION FOR CONTINENCE

Steven Gregg

1415 Stuart Engals Blvd. Suite 104

Mt. Pleasant, SC 29464

(843) 419-5307

(914) 582-1731

(843) 377-0905

SGregg@NAFC.org

www.nafc.org

1,2,4,6,7 English, Spanish

Incontinentia Pigmenti

INCONTINENTIA PIGMENTI INTERNATIONAL FOUNDATION

Laura M Richter, President & CEO

78 Saint Moritz Dr, Erial, NJ 08081

30 E 72th St, 16th Fl

New York, NY 10021

(212) 452-1231

(212) 452-1406

ipif@ipif.org www.ipif.org/

1,2,3,4,7,8 English, Spanish, French, Italian, Portuguese.

Incontinentia Pigmenti Achromians

See: Ectodermal Dysplasias; Epilepsy; Incontinentia Pigmenti

India Rubber Skin

See: Ehlers-Danlos Syndrome

Infantile Facio-ScapuloHumeral Muscular Dystrophy

See: Facio-Scapulo-Humeral Muscular Dystrophy

Infantile Hypercalcemia Syndrome, Idiopathic

See: Williams Syndrome

Infantile Spasms

See: Epilepsy

Intestinal Neuronal Dysplasia

See: Intestinal PseudoObstruction Syndrome

Intestinal Polyposis

See: Colon Cancer, Hereditary; Polyposis

Intestinal Polyposis-Cutaneous Pigmentation Syndrome

See: Colon Cancer, Hereditary; Polyposis

Intestinal PseudoObstruction Syndrome, Gastroparesis, GERD, Achalasia

ASSOCIATION OF GASTROINTESTINAL MOTILITY DISORDERS, INC. (AGMD)

Maryangela DeGrazia-DiTucci

12 Roberts Drive

Bedford, MA 01730

(781) 275-1300

(781) 275-1304

digestive.motility@gmail.com

www.agmd-gimotility.org

1,2,3,4,6,7 English

Intestinal PseudoObstruction; Hirschsprung's Disease

INTERNATIONAL HYDRANENCEPHALY SUPPORT GROUP

Lynne Trease

85667 516th Avenue

Clearwater, NE 68726

(402) 485-2229

hydranencephaly.com

1,2,6,7,8,9 English

Intrahepatic Bile Duct Paucity

See: Alagille Syndrome

Isovaleric Acidemia (IVA)

See: Acidemia, Organic

Isovaleryl-CoA Carboxylase Deficiency

See: Acidemia, Organic

Jansky-Biel schowsky Disease

See: Batten Disease; Tay-Sachs Disease

Jeghers Syndrome

See: Colon Cancer, Hereditary; Polyposis

Jervell and 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

JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION (JSRDF)

Stephen Mack

414 Hungerford Dr. Suite 252

Rockville, MD 20850-4193

(614) 864-1362

(614) 864-1362

info@jsrdf.org

www.jsfrcd.org

1,2,3,4,6,7,9 English

Juvenile GoutChoreoathetosis-Mental Retardation Syndrome

See: Lesch-Nyhan Disease

Kallman Syndrome

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

Kast Syndrome

See: Cancer; Ollier Disease

Kearns-Sayre Syndrome

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

Keratitis Follicularis Spinulosa Decalvans

See: Ectodermal Dysplasias; Ichthyosis

Keratitis-IchthyosisDeafness (KID) Syndrome

See: Ectodermal Dysplasias; Ichthyosis; Hearing Impairments

Kernicterus

PARENTS OF INFANTS AND CHILDREN WITH KERNICTERUS (PICK)

Mitchell Dvorak

P.O. Box 10744

White Bear Lake, MN 55110

(312) 274-9695

www.PICKonline.org

1,2,3,4,6,7,8,9 English, Spanish

Ketoaciduria

See: Maple Syrup Urine Disease

Ketotic Hyperglycinemia

See: Acidemia, Organic

KID Syndrome

See: Ectodermal Dysplasias; Ichthyosis; Hearing Impairments

Kidney Diseases, Hereditary

See Cystinosis; Kidney Disorders; Oxalosis and Hyperoxaluria

Kidney Disorders

AMERICAN ASSOCIATION OF KIDNEY PATIENTS

Gary Green

2701 N. Rocky Point Dr, Suite 150

Tampa, FL 33607

(800) 749-2257

(813) 636-8122

info@aakp.org

1,2,4,5,6,7,8

AMERICAN KIDNEY FUND

11921 Rockville Pike, Suite 300

Rockville, MD 20852

(800) 638-8299

(301) 881-3052

(301) 881-0898

www.kidneyfund.org

English

KIDNEY FOUNDATION OF CANADA

Wim Wolfs

300-5165 Sherbrooke St W

Montreal, QC H4A IT6

(514) 369-4806

(800) 361-7494

(514) 369-2472

info@kidney.ca

www.kidney.ca

1,2 French/Chinese/Punjabi materials PKD materials available

NATIONAL KIDNEY FOUNDATION

Bryan N. Becker

30 E. 33rd St.

New York, NY 10016

(800) 622-9010

(212) 889-2210

(212) 689-9261

info@kidney.org

www.kidney.org

1,2,4,5,7,8

NATIONAL RESOURCES FOR SPECIFIC DISABILITIES, KIDNEY DISORDERS PKD FOUNDATION

Dave Switzer

8330 Ward Parkway, Suite 510

Kansas City, MO 64114

(800) PKD-CURE (753-2873)

(816) 931-2600

(816) 931-8655

pkdcure@pkdcure.org

www.pkdcure.org

NATIONAL RESOURCES FOR SPECIFIC DISABILITIES, KLINEFELTER SYNDROME 49 XXXXY SYNDROME ASSOCIATION

Elise Watzka

870 Miranda Green

Palo Atto, CA 94306

(360) 892-7547

epwatzka@gmail.com

klinefeltersyndrome.org/49er.htm

1,3,4,6,9 English

NATIONAL RESOURCES FOR SPECIFIC DISABILITIES, KLINEFELTER SYNDROME AXYS

(formerly Klinefelter Syndrome & Associates, Inc.--KS&A)

Serving all X and Y chromosome

variations

James Moore

P.O. Box 872

Pine, CO 80470-0872

(303) 400-9040

(888) 999-9428

info@genetic.org

www.axysgenetic.org

1,2,3,4,5,6,7,8,9 Spanish, English, Cantonese, Chinese, Greek, Hebrew, Mandarin

NATIONAL RESOURCES FOR SPECIFIC DISABILITIES, LEARNING DISABILIIES

Learning Disabilties Association

of New Brunswick

Provincial Office 203-403 Rue

Regent

St. Fredericton, NB E3B 3X6

(506) 459-7852

(506) 455-9300 fa

ldanb@nald.ca

NATIONAL RESOURCES FOR SPECIFIC DISABILITIES, LEARNING DISABILIIES

NorQuest College, Learning

Support Services

Suzanne Panteluk

10215-108 St NW Room 104, Main Building

Edmonton, AB T5J 1L6

(780) 644-6000

(866) 534-7218

(780) 644-6013

suzanne.panteluk@norquest.ca

www.norquest.ab.ca

English

Kidney Stones

See: Cystinuria

Kinky Hair Disease

See: Menkes Disease; Kinsborne's Syndrome

Kirghizian Dermatoosteolysis

See: Ectodermal Dysplasias

Klippel-Trenaunay-Weber Syndrome

See: Klippel-Trenaunay Syndrome

Klippel-Trenaunay Syndrome

See Nevi, Giant Congenital; Sturge-Weber Syndrome

Krabbe Disease

See: Leukodystrophy, Tay-Sachs Disease

Kugelberg-Welander Disease

See: Spinal Muscular Atrophy

Kussmaul-Landry ParaLysis

See: Guillain-Barr Syndrome

Kyphosis

See: Scoliosis

Lactate Dehydrogenase Deficiency

See: Muscular Dystrophy

Lactic Acidosis

See: Glutaric Aciduria, Type I; Metabolic Disorders

Lambert-Eaton Syndrome

See: Muscular Dystrophy

Landouzy-Dejerine Muscular Dystrophy

See: Facio-Scapulo-Humeral Muscular Dystrophy

Landry Ascending Paralysis

See: Guillain-Barr Syndrome

Langer-Giedion Syndrome

See: Ectodermal Dysplasias; Exostoses, Multiple Hereditary

Langerhans Cell Histiocytosis

See: Histiocytosis

Laurence-Moon Syndrome

See: Laurence-Moon-Bardet-Biedl Syndrome

Le Jeune Syndrome

See: Cri Du Chat Syndrome

Learning Disabilities

Allen Institute

Peter Love

85 Jones St.

P.O. Box 100

Amston, CT 06248

(860) 228-6962

giving@alleninstitute.org

2

LEARNING DISABILITIES ASSOCIATION OF AMERICA

Mary-Clare Reynolds

4156 Library Rd.

Pittsburgh, PA 15234-1349

(412) 341-1515

(412) 344-0224

info@ldaamerica.org

www.ldaamerica.org

1,2,4,5,6,7, English, Spanish

LEARNING DISABILITIES ASSOCIATION OF NEW YORK CITY

Donald Fann

237 W. 35th Street, Suite 1101

New York, NY 10011

(212) 645-6730

(212) 924-8896

info@ldanyc.org

www.ldanyc.org

4 Spanish, English

NATIONAL CENTER FOR LEARNING DISABILITIES

Dr. Sheldon Horowitz

381 Park Avenue South, Suite 1401

New York, NY 10016

(212) 545-7510

(888) 575-7373

(212) 545-9665

ncld@ndd.org

www.ld.org/

www.GetReadytoRead.org/

www.RTINetwork.org/

www. LD Navigator. ncld.org

1,2

Learning Disabilities, Blindness, Low Vision, Physical Disabilities

Benetech/Bookshare R.

480 S. California Ave, Suite 201

Palo Alto, CA 94306-1609

(650) 644-3400

(650) 475-1066

info@benetech.org

www.benetech.org

Leigh's Disease

See: Lactic Acidosis; Mitochondrial Disorders

Lenz-Passarge Dysplasia

See: Ectodermal Dysplasias

Leptocytosis, Hereditary

See: Cooley Anemia

Leptomeningeal Angiomatosis

See: Sturge-Weber Syndrome

Lesch-Nyhan Disease

LESCH-NYHAN DISEASE REGISTRY

Lowell Anderson

School of Medicine, Psychiatry

1 Washington Square Village

Apt 14-A

New York, NY 10012

(212) 420-0622

www.lndinfo.org

1,2,3 English

Letterer-Siwe Disease

See: Histiocytosis

Leukemia

LEUKEMIA & LYMPHOMA SOCIETY

Information Resource Center

1311 Mamaroneck Ave, Suite 310

White Plains, NY 10605

(800) 955-4572

(914) 821-3657

infocenter@lls.org

www.lls.org

1,2,3,4,5,6,7,8 Spanish, French

Leukodystrophy

UNITED LEUKODYSTROPHY FOUNDATION

Kirsten Kotlarchik

224 N. 2nd St, Suite 2

DeKalb, IL 60115

(815) 748-3211

(800) 278-5483

(815) 748-0844

office@ulf.org

www.ulf.org

1,2,3,4,6,7,8,9 Limited

Spanish/French materials

Leukodystrophy, Metachromatic

See: Leukodystrophy, Tay-Sachs Disease

Limb-Girdle Muscular Dystrophy

See: Muscular Dystrophy

Limit Dextrinosis

See: Glycogen Storage Diseases; Muscular Dystrophy

Lipid Histiocytosis

See: Niemann-Pick Disease

Lipidosis, Cerebroside

See: Gaucher Disease

Lipofuscinoses, Neuronal Ceroid

See: Batten Disease

Lipoid Hyperplasia, Congenital

See: Adrenal Disorders

Lissencephaly--All Neuronal Migration Disorders

LISSENCEPHALY NETWORK, INC.

Dianna Fitzgerald

10408 Bitterroot Ct.

Fort Wayne, IN 46804-6931

(219) 432-4310

(219) 432-4310

LissencephalyOne@aol.com

1,2,3,4,6,8,9 English, Spanish, German and Greek

Liver Disorders

AMERICAN LIVER FOUNDATION

Jonathan Martin, National

Director of Programs

39 Broadway, Suite 2700

New York, NY 10006

(800) 465-4837

(212) 668-1000

(212) 483-8179

info@liverfoundation.org

www.liverfoundation.org

2,4,5,6,7,8 English, Selected information provided in Spanish, Chinese, Korean

CANADIAN LIVER FOUNDATION

Billie Potkonjak

Suite 801,3100 Steeles Ave East

Markham, ON L3R 8T3

(800) 563-5483

(416) 491-3353

(905) 752-1540

clf@liver.ca

www.liver.ca/Home.aspx

2,5,8 English, French and Chinese materials

Liver Phosphorylase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Lobstein Disease, Type I

See: Osteogenesis Imperfecta

Long Q-T Syndrome Acid Maltase Deficiency

SUDDEN ARRHYTHMIA DEATH SYNDROMES (SADS) FOUNDATION

Alice Lara

508 E. South Temple, Suite 202

Salt Lake City, UT 84102

(800) STO-PSAD

(801) 505-0282

sads@sads.org

www.sads.org

1,2,3,4,6,8,9 English, Spanish materials

Lordosis

See: Scoliosis

Lowe Syndrome

LOWE SYNDROME ASSOCIATION

Deborah Jacobs

P.O. Box 864346

Plano, TX 75086-4346

(972) 733-1338

info@lowesyndrome.org

www.lowesyndrome.org

1,2,3,6,8,9 English

Lowe-Bickel Syndrome

See: Lowe Syndrome

Lowe-Terry-Machlachlan Syndrome

See: Lowe Syndrome

Lung Diseases

AMERICAN LUNG ASSOCIATION

Bernadette A. Toomey

1301 Pennsylvania Avenue, NW

Suite 800

Washington, DC 20004

(202) 785-3355

(800) LUN-GUSA

(202) 452-1805

www.lungusa.org/

AMERICAN LUNG ASSOCIATION

Chrystal V Headen

1301 Pennsylvania Ave. NW, Suite 800

Washington, DC 20004

(202) 785-3355

(202) 452-1805

info@lung.org

www.lungusa.org

1,2,5,6,7,8,9 English, Spanish

ONTARIO LUNG ASSOCIATION

401-18 Wynford Drive

Toronto, ON M3C 0K8

(888) 344-LUNG5864

(416) 864-9916

olalung@on.lung.ca

www.on.lung.ca

Lupus Erythematosis

SLE LUPUS FOUNDATION INC.

Margaret G. Dowd

330 Seventh Avenue, Suite 1701

New York, NY 10001

(212) 685-4118

(800) 74L-UPUS

(212) 545-1843

lupus@lupusny.org

www.lupusny.org

1,2,3,4,5,6,7,8 English, Spanish materials

LUPUS CANADA

Leanne Mielczarek

3555 14th Avenue, Unit #3, Markham, ON L3R 0H5

(905) 513-0004

(800) 661-1468

(905) 513-9516

info@lupuscanada.org

www.lupuscanada.org

1,2,4,5,6,7,8,9 English, French

LUPUS FOUNDATION OF AMERICA

Health Educator

2000 L Street NW, Suite 410

Washington, DC 20036

(800) 558-0121

(202) 349-1155

(202) 349-1156

lupusinfo@lupus.org

www.lupus.org

1,2,3,4,5,6,7,8,9 English, some publications in Spanish

Lymphedema

NATIONAL LIYMPHEDEMA NETWORK

Saskia R.J. Thiadens R.N.

225 Bush Street, Suite 357

San Francisco, CA 94104

(800) 541-3259

(415) 908-3681

(415) 908-3813

nln@lymphnet.org

www.lymphnet.org

2,4

Lymphohistiocytosis, Familial Erythrophagocytic

See: Histiocytosis

Lymphohistiocytosis, Hemophagocytic

See: Histiocytosis

Lymphohistiocytosis, Malignant

See: Cancer; Histiocytosis

Lymphoma

See: Leukemia

Lysosomal Storage Diseases

See: Reid Maltase Deficiency; Fabry Disease; Gaucher Disease; Mucopolysaccharidosis; Niemann-Pick Disease; Pompe Disease; Tay-Sachs Disease

Macular Degeneration

See: Retinitis Pigmentosa

Macular Diseases

ASSOCIATION FOR MACULAR DISEASES

Nick Stevenson

210 E 64th St, 8th floor

New York, NY 10065

(212) 605-3719

(212) 605-3795

foundation@retinal-research.org

www.macula.org

1,2,4,6,7 English

MACULAR DEGENERATION FOUNDATION

Liz Trauernicht

P.O. Box 531313

Henderson, NV 89053

(888) 633-3937

(702) 450-2908

(702) 450-3396

liz@eyesight.org

www.eyesight.org

1,2,7,8,9 English

Maffucci Syndrome

See: Cancer; Ollier Disease

Male Sex Chromosome Disorders

See: Klinefelter Syndrome

Malignant Hyperthermia

MALIGNANT HYPERTHERMIA ASSOCIATION OF UNITED STATES

P.O. Box 1069

Sherburne, NY 13460

(607) 674-7901

(607) 674-7910

info@mhaus.org

www.mhaus.org

1,2,4,6,9 English, Spanish

Mandibulofacial Dysostosis

See: Nager and Miller Syndromes; Treacher Collins Syndrome

Mannosidosis

See: Tay-Sachs Disease

Maple Syrup Urine Disease

MAPLE SYRUP URINE DISEASE FAMILY SUPPORT GROUP

Sandy Bulcher

9517 Big Bear Ave

Powell, OH 43065

(740) 972-5619

director@msud-support.org

www.msud-support.org

1,2,3,6,7,8 English, some Spanish

Marden-Walker Syndrome

See: Cleft Palate; Connective Tissue Disorders; Growth Disorders

Marfan Syndrome

GENETIC AORTIC DISORDERS ASSOCIATION CANADA

Chrisanne Campos

Central Plaza PO 128 Queen St. S.

P.O. Box 42257

Mississauga, ON L5M 4Z0

(905) 826-3223

(866) 722-1722

(905) 826-2125

info@gadacanada.ca

www.gadacanada.ca

1,2,4,6,8,9 English, French

THE MARFAN FOUNDATION

Amy Kaplan RN, BSN

22 Manhasset Avenue

Port Washington, NY 11050

(800) 8MA-RFAN ext 22

(516) 883-8712

(516) 883-8040

staff@marfan.org

www.marfan.org

1,2,3,4,5,6,7,8,9

English, limited Spanish materials Marker x syndrome

See: Fragile X Syndrome

Marshall Syndrome, Type I

See: Ectodermal Dysplasia

Marteaux-lamy syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Mast Cell Disease, Systemic

THE MASTOCYTOSIS SOCIETY, INC.

Valerie M. Slee, RN, BSN

PO. Box 129

Hastings, NE 68902-0129

(909) 206-2786

chairman@tmsforacure.org

www.tmsforacure.org

1,2,3,4,5,6,7,8 English, Spanish

McArdle Disease

See: Glycogen Storage Diseases; Muscular Dystrophy

Mediterranean Anemia

See: Cooley Anemia

Medium-Chain Acyl-Coa Dehydrogenase Deficiency (MCAD)

See: Fatty Oxidation Disorders

Medulloblastoma, Hereditary

See: Brain Tumors

Meerkeren-Ehlers-Danlos Syndrome

See: Ehlers-Danlos Syndrome

Meige Disease

See: Lymphedema

Melanoleucoderma Ectodermal Dysplasias

See: Colon Cancer, Hereditary;

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 and Dizziness

Meningeal Capillary Angiomatosis

See: Sturge-Weber Syndrome

Meningococcal Disease

THE NATIONAL MENINGITIS ASSOCIATION, INC. (NMA)

P.O. Box 725165

Atlanta, GA 31139

(866) 366-3662

(866) FON-ENMA

(877) 703-6096

support@nmaus.org

www.nmaus.org

Menkes Disease

See: Liver Disorders; Metabolic Disorders

Mental Health

The George Washington University

Dr. Juliana Taymans

Graduate School of Education and Human Development

The HEATH Resource Center at the National Youth Transitions

Center 2134 GStreet, N.W.I

Washington, DC 20052-0001

askheath@gwu.edu

www.heath.gwu.edu

1,2 English

FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH

Sandra Spencer

9605 Medical Center Dr, Suite 280

Rockvillie, MD 20850

(201) 403-1901

(201) 403-1909

ffcmh@ffcmh.org

www.ffcmh.org

2,4,5,6,7 Spanish material

Mental Illiness

FRIENDS' HEALTH CONNECTION FOR PEOPLE WITH MEDICAL CONDITIONS AND FOR CAREGIVERS

Roxanne Black-Weisheit

PO. Box 114

New Brunswick, NJ 08903

(732) 418-1811

(800) 483-7436

(732) 249-9897

info@friendshealthconnection.org

www.friendshealthconnection.org

CANADIAN MENTAL HEALTH ASSOCIATION, NATIONAL OFFICE

1110-151 Slater Street

Ottawa, ON K1P 5H3

(613) 745-7750

(613) 745-5522

www.cmha.ca

2,4,7

CHILDREN'S HOSPICE INTERNATIONAL

Ann Armstrong-Dailey

500 Montgomery Street, Suite 400

Alexandria, VA 22314

(703) 684-0330

info@chionline.org

www.chionline.org

FAMILY NETWORK ON DISABILITIES OF FLORIDA, INC.

Rich La Belle

2196 Main St Suite K

Dunedin, FL 34698

(727) 523-1130

(800) 825-5736

(727) 523-8687

richlabelle@fndusa.org

fndfl.org/

1,2,3,4,7 English, Spanish, Kreole

MENTAL HEALTH AMERICA

Anisha Imhoff-Kerr

2000 N. Beauregard St, 6th Floor

Alexandria, VA 22311

(703) 684-7722

(800) 969-6642

(703) 684-5968

infoctr@mentalhealthamerica.net

www.nmha.org

1,2,4,5,6,7 English, Spanish materials

MENTAL HEALTH AMERICA OF COLORADO

Laura Cordes

1385 S. Colorado Blvd., Suite 610

Denver, CO 80222

(720) 208-2220

(800) 456-3249

(720) 208-2250

lcordes@mhacolorado.org

www.mhacolorado.org

4 English, Spanish

NAMI

Lynn Borton

3803 N. Fairfax Dr., Suite 100

Arlington, VA 22203

(703) 516-7979

(800) 950-6264 HelpLine

info@nami.org

www.nami.org

1,2,4,5,6,7 English, Spanish

Mental Retardation

THE ARC OF THE UNITED STATES

Peter V. Berns

1825 K Street NW, Suite 1200

Washington, DC 20006

(202) 534-3700

(800) 433-5255

(202) 534-3731

www.thearc.org/

1,2,3,4,5,6,7,8 English and Spanish materials

VIRGINIA DEPARTMENT OF REHABILITATIVE SERVICES

James A. Rothrock

8004 Franklin Farms Drive

Richmond, VA 23229-5019

(804) 662-7000

(800) 552-5019

(804) 662-9532

dars@dars.virginia.gov

www.vadrs.org

2,3,4

AUTISM DEVELOPMENTAL DISABILITIES

Professional Education and Respite Service INC

Jesse Kurshner

500 West Jubal Early Dr, Suite 210

Winchester, VA 22601

(540) 431 5641

(540) 431 5628

misterk@thePERS.com

www.thePERS.com

1,2,3 English

Mental Retardation, Intellectual Disabilities, Developmental

VOR (formerlyVoice of the Retarded)

Tamie Hopp

836 S. Arlington Heights Rd., #351

Elk Grove Village, IL 60007

(605) 399-1624

(877) 399-4867

(605) 399-1631

thopp@vor.net

www.vor.net

1,2,3,4,5,6,7 English

AMERICAN ASSOCIATION ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Doreen Croser

501 3rd Street, NW Suite 200

Washington, DC 20001

(800) 424-3688

(202) 387-1968

(202) 387-2193

dcroser@aaidd.org

www.aaidd.org

1,2,3,4,5,6,7 French, Spanish

NATIONAL ASSOCIATION OF THE DUALLY DIAGNOSED (NADD)

Robert J. Fletcher DSW

132 Fair St Kingston, NY 12401

(800) 331-5362

(845) 331-4336

(846) 331-4569

info@thenadd.org

www.thenadd.org

1,2,3,4,5,6,7

NATIONAL, INFORMATIONAL, AND REGIONAL CONFERENCES

Mental/Retardation

Developmental Disabilities

Nurses Association (DDNA)

Mary Alice Willis

PO. Box 536489

Orlando, FL 32853-6489

(800) 888-6733

(407) 835-0642

(407) 426-7440

contact@ddna.org

www.ddna.org

1,2,3,4,5,6,7 English

MERRF Syndrome

See: Myoclonus; Mitochondrial Disorders

Metabolic Disorders

CLIMB

Pam Davies

Climb Building, 176 Nantwich Rd

Crewe, Cheshire UK CW2 6BG

(084) 524-12173

(084) 524-12174

pam@climb.org.uk

www.climb.org.uk

1,2,3,4,5,6,7,8 English

Metabolic Disorders

THE WORLD LIFE FOUNDATION

PO. Box 571

Bedford, TX 76095

(800) 289-5433

(800) 289-5433

(817) 285-0216

English, Spanish

Metachromatic Leukodystrophy

See: Leukodystrophy; Tay-Sachs Disease

Metaphyseal Dysostosis, Type B IV

See: Shwachman Syndrome

Methylmalonic Acidemia

See: Acidemia, Organic 1 Microphthalmia

See: Anophthalmia; Visual Impairments

Microsomia, Hemifacial

See: Craniofacial Disorders

Migraines

See: Hemiplegia, Alternating

Mikaelian Syndrome

See: Ectodermal Dysplasias

Miller Syndrome

See: Nager and Miller Syndromes

Miller-Dieker Syndrome

See: Lissencephaly

Miller-Fischer Syndrome

See: Guillain-Barr Syndrome

Milroy Disease

See: Lymphedema

Mitochondrial Disorders

THE UNITED MITOCHONDRIAL DISEASE FOUNDATION (UMDF)

Janet Owens

8085 Saltsburg Rd, Ste 201

Pittsburgh, PA 15239

(412) 793-8077 ext 107

(888) 317-UMDF

(412) 793-6477

info@umdf.org

www.umdf.org

1,2,3,4,5,6,7,8,9 English

Mitochondrial Myopathy

See: Mitochondrial Disorders; Muscular Dystrophy, DejerineLandouzy

Immune Deficiency

See: Immune Disorders

Moebius Syndrome

MOEBIUS SYNDROME FOUNDATION

Vicki McCarrell

PO. Box 147

Pilot Grove, MO 65276

(660) 834-3406

vicki@moebiussyndrome.com

www.moebiussyndrome.com

1,2,3,6,8,9 English

Monosomy X

See: Turner Syndrome

Morquio Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Morvan Disease

See: Syringomyelia

Motor-Sensory Neuropathy, Hereditary

See: Charcot-Marie-Tooth Disease

Moyamoya Disease

See: Stroke; Vascular

Mucolipidoses

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

Mucolipidosis Type IV

ML4 FOUNDATION

Dr. Rebecca Oberman

3500 Piedmont Road, Suite 500

Atlanta, GA 30305

(877) ML4-5459

info@ml4.org

www.ml4.org

1,2,3,6,7,8,9

NATIONAL MPS SOCIETY

Laurie J. Turner

PO. Box 14686

Durham, NC 27709-4686

(919) 806-0101

(877) M PS-1001

(919) 806-2055

info@mpssociety.org

www.mpssociety.org

1,2,3,4,6,7,8 English and booklets in Spanish

Mucosulfatidosis

See: Hearing Impairments; Ichthyosis; Leukodystrophy; TaySachs Disease

Multiple Carboxylase Deficiency

See: Metabolic Disorders

Multiple Endocrine Neoplasia I

See: Adrenal Disorders; Diabetes Mellitus; Thyroid Disorders

Multiple Hereditary Exostosis

See: Ollier's disease

Multiple Sclerosis

MULTIPLE SCLEROSIS SOCIETY OF CANADA

175 Bloor Street East, Suite 700, North Tower

Toronto, ON M4W 3R8

(416) 922-6065

(416) 922-6065

(416) 922-7538

info@mssociety.ca

www.mssociety.ca

1,2,4,5,6,7,8,9 English, French

MULTIPLE SCLEROSIS SOCIETY-THUNDER BAY CHAPTER

Office Support

102 79 N. Court St.

Thunder Bay, ON P7A 4T7

(807) 344-2944

(807) 346-5923

English, French/Finnish reading material

NATIONAL MULTIPLE SCLEROSIS SOCIETY

Shari Mazzella

1000 Elmwood Ave, Suite 900

Rochester, NY 14620-3901

(800) 344-4867

(585) 442-2817

nyrevents@nmss.org

Msupstateny.org

1,2,4,5,7,8,9 English, Spanish materials

Multiple Sulfatase Deficiency

See: Hearing Impairments; Ichthyosis; Leukodystrophy; TaySachs Disease

Muscle Phosphofructokinase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Muscle Phosphorylase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Muscular Atrophy, Peroneal

See: Charcot-Marie-Tooth Disease

Muscular Disorders

See: Freeman-Sheldon Syndrome

Muscular Dystrophies and over fifty allied disorders

SOCIETY FOR MUSCULAR DYSTROPHY INFORMATION INTERNATIONAL

Linda Dobson

S.M.D.I International

PO. Box 7490

Bridgewater, NS B4V 2X6

(902) 685-3961

(902) 682-3142

smdi@auracom.com

2,4 English

MUSCULAR DYSTROPHY ASSOCIATION

Bob Mackle

3300 East Sunrise Drive

Tucson, AZ 85718

(520) 529-2000

(800) 572-1717

(520) 529-5300

mda@mdausa.org

www.mda.org

2,4,5,6,7,8,9 English, Spanish

Muscular Dystrophy, Neuromuscular Disease Dejerine-Landouzy

MUSCULAR DYSTROPHY FAMILY FOUNDATION

Kim Stoneking CAE

PO. Box 776

Carmel, IN 46082

(317) 615-9140

mdfamilyfoundation@gmail.com

www.mdff.org

1,2,3,4,7 English, Spanish

Myasthenia Gravis

MYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC

Tor Holtan

355 Lexington Ave, 15th Floor

New York, NY 10017

(800) 541-5454

(212) 297-2156

(212) 370-9047

THoltan@myasthenia.org

www.myasthenia.org

1,2,4,5,6,7,8,9 English, Spanish

Myasthenic syndrome of Lambert-Eaton

See: Charcot-Marie-Tooth Disease

Myelin Disorders

THE CANADIAN MYELIN RESEARCH INITIATIVE

Wayne Simmons

4330 Spinningdale Ct

Mississauga, ON L5M 3J8

(905) 567-5183

(905) 567-9189

myelin@interlog.com

2,6,7,8,9

Myelitis

THE TRANSVERSE MYELITIS ASSOCIATION

Sandy Siegel

1787 Sutter Parkway

Powell, OH 43065-8806

(855) 380-3330

(614) 317-4884

info@myelitis.org

www.myelitis.org

1,2,3,5,6,7,8,9 English

Myelodysplasia

See: Anemia, Aplastic

Myeloma

INTERNATIONAL MYELOMA FOUNDATION

Kelly Coxs

12650 Riverside Dr, Suite 206

N Hollywood, CA 91607-3421

(800) 452-2873

(818) 487-7455

(818) 487-7454

theimf@myeloma.org

www.myeloma.org

1,2,3,4,6,7,8 English, Spanish, Italian, German and others

Myeloma, Multiple

See: Myeloma

Myelosyringosis

See: Syringomyelia

Myoadenylate Deaminase Deficiency

See: Muscular Dystrophy

Myoclonus

THE NATIONAL PEDIATRIC MYOCLONUS CENTER

Elizabeth D. Tate

Southern Illinois University School of Medicine PO. Box 19643

Springfield, IL 62794-9643

(217) 545-7635

(217) 545-1903

www.OMSUSA.org

1,2,7,9 English, Also provides info and support on ADD

Myodenylate Deaminase Deficiency

See: Muscular Dystrophy

Myopathies, Congenital

See: Myotubular Myopathy, XLinked

Myopathy, Centronuclear

See: Myotubular Myopathy, XLinked; Muscular Dystrophy

Myopathy, Hyperthyroid

See: Muscular Dystrophy; Thyroid Disorders

Myophosphorylase Deficiency

See: Glycogen Storage Diseases Myositis, Autoimmune

Myotubular Myopathy, X-Linked

MYOTUBULAR MYOPATHY RESOURCE GROUP

Pamela Scoggin

2602 Quaker Drive

Texas City, TX 77590

(409) 945-8569

pam@scoggin.com

www.mtmrg.org

2 English

Myxedema

See: Thyroid Disorders

N-Acetyl Glutamate Synthetase (NAGS) Deficiency

See: Urea Cycle Disorders

Naegeli-FranceschettiJadassohn Syndrome

See: Incontinentia Pigmenti

Nager & Miller Syndromes

THE FOUNDATION FOR NAGER AND MILLER SYNDROMES (FNMS)

Dede Van Quill

13210 SE 342nd St.

Auburn, WA 98092

(800) 507-3667

(253) 333-1483

(253) 288-7679

dede@fnms.net

www.fnms.net

1,2,3,4,6,7,8,9 English

Nasal Encephalocele

See: Craniofacial Disorders

Nemaline Myopathy

See: Muscular Dystrophy

Nephritis

See: Kidney Diseases, Hereditary, Fetal Alcohol Syndrome

Neurodegeneration with Brain Iron Accumulation (NBIA)

NBIA DISORDERS ASSOCIATION

(formerly Hallervorden-Spatz

Syndrome Association)

Patricia V. Wood

2082 Monaco Ct.

El Cajon, CA 92019-4235

(619) 588-2315

(619) 588-4093

info@NBIAdisorders.org

www.NBIAdisorders.org

1,2,3,6,8 English/German

Neurofibromatosis

NEUROFIBROMATOSIS, INC.

Kim Bischoff

213 S. Wheaton St.

Wheaton, IL 60187

(630) 510-1115

(800) 942-6825

(630) 627-1117

admin@nfnetwork.org

www.nfnetwork.org

1,2,4,5,7,8 English, Spanish

THE CHILDREN'S TUMOR FOUNDATION

John Risner

95 Pine Street, 16th Floor

New York, NY 10005-1703

(212) 344-6633

(800) 323-7938

(212) 747-0004

kmills@ctf.org

www.CTF.org

2,9

Neurological Disorders

ASSOCIATION FOR COMPREHENSIVE NEUROTHERAPY LATITUDES

Sheila Rogers DeMare

20504 Canal Drive

Grosse Ile, MI 48138

acn@latitudes.org

www.latitudes.org

1,2,4,7 English

CHILDREN'S NEUROBIOLOGICAL SOLUTIONS

Alex Richmond

1223 Wilshire Blvd, #937

Santa Monica, CA 90403

(310) 889-8611

(805) 963-6633

info@cnsfoundation.org

www.cnsfoundation.org

1,5,7,8

THE COLLEEN GIBLIN FOUNDATION

Meg Minassian

700D Lake Street

Ramsey, NJ 7446

(201) 962-8686

(201) 962-8688

cgf01@aol.com

8,9

Neurological Disorders, Osteogenesis Imperfecta,

DOWN SYNDROME CLINIC AND RESEARCH CENTER (DSCRC) AT THE KENNEDY KRIEGER INSTITUTE

George Capone MD

707 N. Broadway

Baltimore, MD 21205

(443) 923-9200

(800) 873-3377

(443) 923-9400

www.kennedykrieger.org

Neurometabolic Disorders

See: Metabolic Disorders

Neuromuscular Disorders, Muscular Dystrophy, Acid Maltase Deficiency

MUSCULAR DYSTROPHY CANADA

Margaret Otter

2345 Yonge St, Suite 901

Toronto, ON M4P 2E5

(416) 488-2699

(800) 567-2873

(416) 488-0107

info@muscle.ca

www.muscle.ca

1,2,3,4,5,6,7,8,9 English, French

Neuronal Ceroid Lipofuscinoses

See: Batten Disease

Neuropathy, Auditory

See: Kernicterus

Neuropathy, Hereditary, Sensory Motor

See: Charcot-Marie-Tooth Disease

Neuropathy, Peripheral

See: Charcot-Marie-Tooth Disease

Neurotransmitter Diseases, Pediatric

PEDIATRIC NEUROTRANSMITTER DISEASE ASSOCIATION

Nancy Speller

28 Prescott Place

Old Bethpage, NY 11804

pnd@pndassociation.org

www.pndassoc.org

2,3,7,8,9

Neutropenia-Pancreatic Insufficiency

See: Shwachman Syndrome

Neville Disease

See: Niemann-Pick Disease

Nevo Syndrome

See: Sotos Syndrome

Niemann-Pick Disease

ARA PARSEGHIAN MEDICAL RESEARCH FOUNDATION

Peg Romano

4729 E Sunrise Dr, #327

Tucson, AZ 85718-4535

(520) 577-5106

(520) 577-5212

promano@parseghian.org

www.parseghian.org

English

Niemann-Pick Disease

NATIONAL NIEMANN-PICK DISEASE FOUNDATION (NNPDF)

Nadine M. Hill

P.O. Box 49; 401 Madison Ave, Suite B

Fort Atkinson, WI 53538

(920) 563-0930

(920) 563-0931

nnpdf@nnpdf.org

www.nnpdf.org

1,2,3,4,6,7,8 English

Nonketotic Hyperglycinemia

See: Acidemia, Organic

Norman-Roberts Syndrome

See: Lissencephaly

Nyhan Syndrome

See: Lesch-Nyhan Syndrome

OAV Syndrome

See: Goldenhar Syndrome

Obsessive-Compulsive Disorder

INTERNATIONAL OCD FOUNDATION

Alex Bahrawy

P.O. Box 961029

Boston, MA 2196

(617) 973-5801

(617) 973-5803

info@iocdf.org

www.iocdf.org

1,2,4,5,6,7,8,9 English

Obstructive Hydrocephalus

See: Dandy-Walker Syndrome

Oculo-Auriculo-Vertebral Spectrum

See: Goldenhar Syndrome

Oculocerebrorenal Syndrome

See: Lowe Syndrome

Oculodentodigital Syndrome, Type I and II

See: Ectodermal Dysplasias

Oculoosteocutaneous Syndrome

See: Ectodermal Dysplasias

Odontoonychodermal Dysplasia

See: Ectodermal Dysplasias

Odontoonychohypo-hidrotic Dysplasia

See: Ectodermal Dysplasias

Odontotrichodysplasia with Neutropenia

See: Ectodermal Dysplasias; Neutropenia

Odontotrichomelic Syndrome

See: Ectodermal Dysplasias

Oldfield Syndrome

See: Colon Cancer, Hereditary; Polyposis

Oligophrenia Microphthalmos

See: Norrie Disease

Oligosaccharidoses

See: Tay-Sachs Disease

Ondine's Curse

See: Central Hypoventilation Syndrome, Congenital

Opitz FG Syndrome

See: FG Syndrome

Opitz Hypertelorism-Hypospadius Syndrome

See: Opitz Syndrome

Opitz Oculogenitolaryngeal Syndrome

See: Opitz Syndrome

Opitz Syndrome

OPITZ G/BBB FAMILY NETWORK

Dr. John M. Opitz

5974 N Willowdale Lane, Garden City, ID 83714

(208) 286-2300

opitznet@rkymtnhi.com

www.opitznet.org/

1,2 English, Spanish, Japanese, Italian

Opitz-BBBG Compound Syndrome

See: Opitz Syndrome

Opitz-Frias Syndrome

See: Opitz Syndrome

Opsoclonus-Myoclonus Syndrome

OPSOCLONUS-MYOCLONUS SUPPORT NETWORK

Connie Quinn

725 North St

Jim Thorpe, PA 18229

(626) 919-2448

3

Optic Nerve Hypoplasia

See: Septo-Optic Dysplasia

Optic Nerve Hypoplasia

See: Septo-Optic Dysplasia

Orbital Hypertelorism

See: Craniofacial Disorders

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

Osteogenesis Imperfecta

OSTEOGENESIS IMPERFECTA FOUNDATION

Tracy Hart

804 W. Diamond Ave., Suite 210

Gaithersburg, MD 20878

(800) 981-2663

(301) 947-0083

(301) 947-0456

bonelink@oif.org

www.oif.org

1,2,3,4,6,7,8,9 English

Ostomy

OSTOMY CANADA SOCIETY INC.

344 Bloor St. West, Suite 501

Toronto, ON M5S 3A7

(416) 595-5452

(888) 969-9698

(416) 595-9924

info1 @ostomycanada.ca

www.ostomycanada.ca

1,2,3,4,5,6,7,8,9 English, French

UNITED OSTOMY

ASSOCIATION, INC.

Dave Rudzin

P.O. Box 512

Northfield, MN 55057-0512

(800) 826-0826

(949) 660-9262

www.uoa.org

UNITED OSTOMY ASSOCIATIONS OF AMERICA, INC

Patti Herubin

2489 Rice Street

Roseville, MN 55113

(800) 826-0826

oa@uoaa.org

www.uoaa.org

1,2,3,5,6,7 English

Oxalosis & Hyperoxaluria

THE OXALOSIS AND HYPEROXALURIA FOUNDATION

Kim Hollander

201 E. 19th St, Suite 12E

New York, NY 10003

(212) 777-0470

(800) OHF-8699

(212) 777-0471

info@ohf.org

www.ohf.org

6,7

Oxoprolinuria

See: Acidemia, Organic

Pachygyria

See: Lissencephaly

Pachyonychia, Congenital

See: Ectodermal Dysplasias

Pagon Syndrome

See: Hydrocephalus; Lissencephaly

Pallister-Hall Syndrome

See: Anorectal Malformations; Pituitary Tumors

Pallister-Killian Mosaic Syndrome chromosome 12

PKS KIDS

Dawn Bergquist

123 Carowinds Drive

Greencastle, PA 17225-1707

(717) 597-4897

dbergquist@pkskids.net

www.pkskids.net

Palmoplantar Hyperkeratosis and Alopecia

See: Ectodermal Dysplasias

Pancytopenia, Congenital

See: Anemia, Fanconi

Panmyelopathy

See: Anemia, Aplastic

Panmyelophthisis

See: Anemia, Aplastic

Panthothenate Kinase-Associated Neurodegeneration (PKAN)

See: Neurodegeneration with Brain Iron Accumulation (NBIA)

Papillomas

See: Respiratory Papillomatosis, Recurrent

Papillon-Lefevre Syndrome

See: Ectodermal Dysplasias

Paralysis, Periodic

See: Muscular Dystrophy

Paralytic Polio

See: Polio

Paramyotonia Congenita

See: Muscular Dystrophy

Parkes-Weber Syndrome

See: Klippel-Trenaunay Syndrome

Paroxymsal Dyskinesias

See: Dystonia

Parry-Romberg Syndrome

See: Craniofacial Disorders

Patin Syndrome

See: Fibrodysplasia Ossificans Progressiva

PDD

See: Autism

Pediatric Brain Tumors Spinal Cord

MAKING HEADWAY FOUNDATION, INC.

Catherine Lepone Executive

Director

115 King St.

Chappaqua, NY 10514-3460

(914) 238-8384

(914) 238-1693

info@makingheadway.org

www.makingheadway.org

4,8 English

Pediatric Cancer

THE CHILDREN'S ONCOLOGY GROUP (COG)

Cheryl Fleming

440 E. Huntington Dr, Suite 400

Arcadia, CA 91006-3776

(800) 458-6223

(626) 241-1686

www.curesearch.org

6

Pelizaeus-Merzbacher Disease

THE PMD FOUNDATION

Jeff Leonard

1307 White Horse Rd, Suite 603

Voorhees, NJ 08043

(609) 443-9623

techsupport@pmdfoundation.org

www.pmdfoundation.org

Pemphigus, Familial

See: Ichthyosis

PEPCK Deficiency

See: Lactic Acidosis;

Mitochondrial Disorders Peripheral Neuropathy

See: Charcot-Marie-Tooth Disease

Peroneal Muscular Atrophy

See: Charcot-Marie-Tooth Disease

Pervasive Developmental Disorder (PDD)

See: Autism

Peutz-Touraine Syndrome

See: Colon Cancer, Hereditary; Polyposis

Pfeiffer Syndrome

See: Craniofacial Disorders

Phakomatosis

See: Tuberous Sclerosis

Phenylketonuria (PKU)

NATIONAL PKU NEWS

Virginia Schuett

6869 Woodlawn Ave NE, Suite 116

Seattle, WA 98115

(206) 525-8140

(800) 723-9166

(206) 525-5023

schuett@pkunews.org

www.pkunews.org

1 English

Phosphoenolpyruvate Carboxykinase Deficiency

See: Lactic Acidosis;

Mitochondrial Disorders Phosphofructo Kinase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Phosphoglycerate Kinase Deficiency

See: Muscular Dystrophy

Phosphoglycerate Mutase Deficiency

See: Muscular Dystrophy

Phosphorylase b Kinase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Phosphorylase Deficiency

See: Glycogen Storage Diseases; Muscular Dystrophy

Pierre Robin Syndrome

See: Craniofacial Disorders; Growth Disorders

Pigment Disorders

See: Albinism & Hypopigmentation; Vitiligo

Pili Torti and Enamel Hypoplasia

See: Ectodermal Dysplasias

Pili Torti and Onychodysplasia

See: Ectodermal Dysplasias

Pituitary

DISORDERS/TUMORS PITUITARY NETWORK ASSOCIATION

Barbara J. Schriber

PO. Box 1958

Thousand Oaks, CA 91358

(805) 499-9973

(805) 480-0633

info@pituitary.org

www.pituitary.org

1,2,3,6,7,8 English

Pityriasis Rubra Pilaris

See: Ichthyosis

Polio and Ventilator Users, Polio

POST-POLIO HEALTH INTERNATIONAL

Joan L. Headley PHI

4207 Lindell Blvd., #110

Saint Louis, MO 63108-2930

(314) 534-0475

(314) 534-5070

director@post-polio.org

www.post-polio.org

1,2,3,4,5,6,7,8 English, Spanish, French, German, and others

Polycystic Kidney Disease

See: Kidney Disorders

Polyendocrine Adenomatosis

See: Multiple Endocrine Neoplasia

Polymyositis

See: Muscular Dystrophy; Myositis

Polyneuritis, Acute Idiopathic

See: Guillain-Barr Syndrome

Polyneuropathy, Chronic Relapsing

See: Guillain-Barr Syndrome

Polyostotic Fibrous Dysplasia

See: McCune-Albright Syndrome

Polyposis

See: Cancer; Colon Cancer, Hereditary

Polyradiculoneuropathy

See: Guillain-Barr Syndrome

Pompe Disease

(AMDA) ACID MALTASE DEFICIENCY ASSOCIATION

Tiffany House

PO. Box 700248

San Antonio, TX 78270-0248

(210) 494-6144

(210) 490-7161

tiffanylhouse@aol.com

www.amda-pompe.org

1,2,3,4,6,7,8,9 English

Porphyria

AMERICAN PORPHYRIA FOUNDATION

Desiree Lyon

4900 Woodway Ste 780

P.O. Box 22712

Houston, TX 77056

(713) 266-9617

(866) APF-3635

(713) 840-9552

www.porphyriafoundation.com/

1,2,3,4,6,8 English

CANADIAN PORPHYRIA FOUNDATION INC.

Lois J. Aitken

487 Walker Ave. Box 1206

Neepawa, MB R0J 1H0

(866) 476-2801

(204) 476-2800

porphyria@cpf-inc.ca

1,2,3,4 English, French

Port Wine Stains

See: Sturge-Weber Syndrome

Postaxial Acrofacial Dysostosis

See: Nager & Miller Syndromes

Post-Polio

See: Polio

Prader-Willi Syndrome

ONTARIO PRADER-WILLI SYNDROME ASSOCIATION

Nita Goldband

POB 73514

Toronto, ON M6C 4A7

(416) 481-8657

(416) 981-7788

opwsa@rogers.com

www.opwsa.com

1,2 English, French

THE PRADER-WILLI SYNDROME ASSOCIATION (USA)

Janalee Heinemann

8588 Potter Park Drive, Suite 500

Sarasota, FL 34238

(800) 926-4797

(941) 312-0400

(941) 312-0142

info@pwsausa.org

www.pwsausa.org

1,2,3,4,5,6,7,8,9 Spanish, French

Prematurity, Birth Defects, Disabilities, General

MARCH OF DIMES FOUNDATION

1275 Mamaroneck Avenue

White Plains, NY 10605

(914) 997-4488

(888) 663-4637

(914) 997-4763

askus@marchofdimes.com

www.marchofdimes.com

1,2,3,4,5,6,7,8,9 English, Spanish

Primary Immune Disorder

See: Granulomatous Disease Chronic

Progeria

THE PROGERIA RESEARCH FOUNDATION, INC

Audrey Gordon

PO. Box 3453

Peabody, MA 01961-3453

(978) 535-2594

(978) 535-5849

info@progeriaresearch.org

www.progeriaresearch.org

1,2,8,9

Progressive Hypoerythemia

See: Anemia, Aplastic

Progressive Osseous Heteroplasia

See: Connective Tissue Disorders; Fibrodysplasia Ossificans Progressiva

Propinonyl-CoA Carboxylase (PCC)

See: Acidemia, Organic

Propionic Acidemia

See: Acidemia, Organic

Proteus Syndrome

See: Neurofibromatosis

Protocoproporphyria

See: Liver Disorders; Porphyria

Protoporphyria

See: Liver Disorders; Porphyria

Pseudocholinesterase Deficiency

See: Malignant Hyperthermia

Pseudo-Hurler Polydystrophy

See: Mucopolysaccharidosis; TaySachs Disease

Pseudoxanthoma Elasticum (PXE)

NATIONAL ASSOCIATION FOR PSEUDOXANTHOMA ELASTICUM

8760 Manchester Road

St. Louis, MO 63144-2724

(314) 962-0100

(314) 962-0100

NAPEStLouis@sbcglobal.net

www.pxenape.org

1,2,3 Newsletter provided on tape, in print and on web

Psoriasis

NATIONAL PSORIASIS FOUNDATION CATIE COMAN

6600 SW 92nd Ave, Suite 300

Portland, OR 97223-7195

(503) 244-7404 ext 367

(800) 723-9166

(503) 245-0626

getinfo@psoriasis.org

www.psoriasis.org

1,2,3,4,6,7,8 English

Ptosis

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

Pulmonary Valvular Stenosis

See: Heart Disorders

Purine Metabolic Disorders

PURINE RESEARCH SOCIETY

Tahma Metz

5424 Beech Avenue

Bethesda, MD 20814

PurineResearchSociety@verizon.net

www.PurineResearchSociety.org

2,4,8 English

Purpura Hemorrhagica

See: Purpura, Idiopathic Thrombocytopenia (ITP)

Purpura, Idiopathic Thrombocytopenia (ITP)

ITP SOCIETY

Children's Blood Foundation

Theotora Zionga

333 E. 38th St. Rm 830

New York, NY 10019

(212) 297-4336

(800) ITP-7010

(212) 297-4340

1,2,3,4,6,8,9 English

Pyrimidine Metabolic Disorders

See: Purine Metabolic Disorders

Pyroglutamicaciduria

See: Acidemia, Organic

Pyrrolorphyria

See: Porphyria

Pyruvate Carboxylase Deficiency

See: Acidemia, Organic; Lactic Acidosis

Pyruvate Dehydrogenase Deficiency

See: Acidemia, Organic; Lactic

Pyruvate Dehydrogenase Phosphatase

See: Lactic Acidosis

Q-T Prolongation

See: Long Q-T Syndrome

Rapp-Hodgkins Syndrome

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

Rare Disorders

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

Mary Dunkle

55 Kenosia Avenue

Danbury, CT 06810

(800) 999-6673

(203) 744-0100

(203) 798-2291

orphan@rarediseases.org

www.rarediseases.org

1,2,3,4,6,8 English

Rasmussen's Syndrome and/or Hemispherectomy

RASMUSSEN'S SYNDROME AND HEMISPHERECTOMY SUPPORT NETWORK

Lynn/Al Miller

8235 Lethbridge Rd

Millersville, MD 21108-1609

(410) 987-5221

rssnlynn@aol.com

www.rarediseases.org

Recklinghausen Disease

See: Neurofibromatosis

Reflex Sympathetic Dystrophy Syndrome

REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION

James W. Broatch, M.S.W., Executive Vice President, Director

99 Cherry Street

Milford, CT 06460

(203) 877-3790

(877) 662-7737

(203) 882-8362

info@rsds.org

www.rsds.org

1,2,3,4,5,6,8

Refractory Anemia

See: Anemia, Aplastic

Refsum Disease

See: Ichthyosis; Leukodystrophy; Tay-Sachs Disease

Renal Disorders

See: Kidney Disorders

Rendu-Osler-Weber Syndrome

See: Hemorrhagic Telangiectasis, Hereditary

Respiratory Papillomatosis, Recurrent

RECURRENT RESPIRATORY PAPILLOMATOSIS FOUNDATION

Bill Stern

12 Ashwood Court

Lawrenceville, NJ 08648

(866) 498-7559

(609) 530-1912

bills@rrpf.org

www.rrpf.org

1,2,3,4,7,8,9

Retinitis Pigmentosa Acid Maltase Deficiency Usher Syndrome, Stargardt Disease, Choroideremia

RETINITIS PIGMENTOSA INTERNATIONAL

Helen Harris

P.O. Box 900

Woodland Hills, CA 91365

(800) 344-4877

(818) 992-0500

(818) 992-3265

info@rpinternational.org

www.rpinternational.org

1,2,4,7,8,9 English, Spanish materials

THE FOUNDATION FIGHTING BLINDNESS

Mitsy Palmer

7168 Columbia Gateway Drive

Suite 100

Columbia, MD 21046

(800) 683-5555

(800) 683-5551

www.FightBlindness.org

1,2,5,6,8,9 English

FOUNDATION FIGHTING BLINDNESS

Sharon Colle

12th Floor, 890 Yonge Street, Toronto, ON M4W 3P4

(800) 461-3331

(416) 360-4200

(416) 360-0060

info@ffb.ca www.ffb.ca

1,2,3,6,7,8,9 English

Retinoblastoma

ASSOCIATION FOR PARENTS OF CHILDREN WITH VISION IMPAIRMENTS

Susan LaVenture

1 North Lexington Ave, 8th Floor

White Plains, NY 10601

(800) 562-6265

(617) 972-7441

(617) 972-7444

info@lighthouseguild.org

www.Napvi.org

1,2 English, Spanish

Retinocerebral Angiomatosis

See: Von Hippel-Lindau Syndrome

Rett Syndrome

RETT SYNDROME RESEARCH FOUNDATION

Monica Coenraads

4600 Devitt Drive

Cincinnati, OH 45246

(800) 818-RETT

(513) 874-3020

(513) 874-2520

mgriffin@rsrf.org

1,2,3,8 English

THE INTERNATIONAL RETT SYNDROME FOUNDATION

Lisa Hayden

4600 Devitt Drive

Cincinnati, OH 45246

(513) 874-3020

(800) 818-7388

(151) 387-42520

lhayden@rettsyndrome.org

www.rettsynd rome.org

1,2,3,4,5,6,7,8,9 English, Spanish

Reye Syndrome

See: Fatty Oxidation Disorder

Ring Chromosome 15

See: Chromosome Deletions; Craniofacial Disorders; Epilepsy; Heart Disorders; Kidney Disorders; Limb Disorders; Scoliosis

Ring Chromosome 18

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

Ring Chromosome 21

See: Chromosome Deletions

Ring Chromosome 22

See: Chromosome Deletions

Ring Chromosome 4

See: Chromosome Deletions; Wolf-Hirschhorn Syndrome

Ring Chromosome 9

See: Chromosome Deletions; Craniofacial Disorders

Robinow Syndrome

ROBINOW SYNDROME FOUNDATION

Karla M. Kruger

P.O, Box 934

Anoka, MN 55303

(763) 291-7190

(763) 434-1152

robinowfoundation@comcast.net

www.Robinow.org

2,3,8,9 English

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

RUBINSTEIN-TAYBI PARENT GROUP USA

Lorrie Baxter

24081 G Lane

Cedar, KS 67628

(785) 697-2984

lbaxter@ruraltel.net

www.rubinstein-taybi.org

2,3 English

Russell Syndrome

See: Russell-Silver Syndrome

Saethre-Chotzen Syndrome

See: Craniofacial Disorders

Salamon Syndrome

See: Ectodermal Dysplasias

Sandhoff Disease

See: Tay-Sachs Disease

Sanfilippo Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Scheie Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Schinzel-Giedion Syndrome

See: Apnea, Sleep; Deaf-Blind; Ectodermal Dysplasias; Epilepsy; Growth Disorders; Hearing Impairments; Visual Impairment

Scid

See: Immune Disorders Scleroderma

SCLERODERMA FOUNDATION, INC.

1300 Rosewood Dr, Suite 105

Danvers, MA 1923

(800) 722-HOPE, 40

(978) 463-5843

(978) 463-5809

sfinfo@scleroderma.org

www.scleroderma.org

1,2,4,5,6,7,8 English, Spanish

Scleroderma

SCLERODERMA RESEARCH FOUNDATION

Emanuel Coronis

220 Mongonmery St, Suite 1411

San Francisco, CA 94104

(800) 441-CURE

(415) 834-9444

(415) 834-9177

info@sclerodermaresearch.org

www.srfcure.org

1,2,4

Scoliosis

NATIONAL SCOLIOSIS FOUNDATION

Joseph O'Brien

5 Cabot Pl

Stoughton, MA 2072

(781) 341-6333

(800) 673-6922

(781) 341-8333

nsf@scoliosis.org

www.scoliosis.org

1,2 English, some Spanish

Seizure Disorders

THRESHOLD--INTRACTABLE SEIZURE DISORDER SUPPORT GROUP & NEWSLETTER

Jacqueline A. Moskowitz

35 Beaverson Blvd, Bldg. 11

Brick, NJ 08723

(800) 372-6510

(732) 528-8080

(732) 262-4373

Jacqui.Moskowitz@fscnj.org

www.fscnj.org

1,2,3,4,5,6,78,9 English, some Spanish, Italian

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

Serum Protease Inhibitor Deficiency

See: Alpha-1-Antitrypsin (AAT) Deficiency

Severe Combined Immunodeficiency (SCID)

See: Immune Disorders

Sex Chromosome Disorders, Male

See: Klinefelter Syndrome

Short Stature Russell-Silver Syndrome Septo Optic Dysplasia

The MAGIC Foundation

Pam Pentaris

6645 W. North Avenue

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808

(708) 383-0899

pam@magicfoundation.org

www.magicfoundation.org

1,2,3,4,6,7

Shprintzen Syndrome

See: Velo-Cardio-Facial Syndrome

Shwachman-Diamond Syndrome

See: Shwachman Syndrome

Shy-Drager/Multiple System Atrophies

See: Dysautonomia

Sialidosis

See: Mucopolysaccharidosis; TaySachs Disease

Sialolipidosis

See: Mucolipidosis Type IV

Sickle Cell Anemia

See: Sickle Cell Disease

Sickle Cell Disease

HEALTH SERVICES SICKLE CELL AGENCY

Gladys Ashe Robinson

1102 E. Market St.

Greensboro, NC 27401

(336) 274-1507

(800) 733-8297

(336) 275-4251

www.piedmonthealthservices.org

1,2,3,4,5,6,7 English, Spanish

Sickle Cell Disease

SICKLE CELL DISEASE ASSOCIATION OF AMERICA

Willard V. Edwards

231 East Baltimore St, Suite 800

Baltimore, MD 21202

(800) 421-8453

(410) 528-1555

(410) 528-1495

scdaa@sicklecelldisease.org

www.sicklecelldisease.org

1,2,3,4,5,6,8,9

SIDS

See: Sudden Infant Death Syndrome (SIDS)

Silver Syndrome

See: Russell-Silver Syndrome

Simpson-Golabi-Behmel Syndrome

See: Beckwith-Wiedermann Syndrome

Skeletal Anomalies

See: Ectodermal Dysplasias

SLD

See: Dyslexia

Sleep Apnea

See: Apnea, Sleep

SLO Syndrome

See: Smith-Lemli-Opitz Syndrome

Sly Syndrome

See: Mucopolysaccharidosis; TaySachs Disease

Smith-Lemli-Opitz

Syndrome

See: Craniofacial Disorder

Smith-Magenis Syndrome

PRISMS, INC. (PARENTS AND RESEARCHERS INTERESTED IN SMITH-MAGENIS SYNDROME)

Randy Beall

21800 Town Center Plaza

Suite #266A-633

Sterling, VA 20164

(972) 231-0035

(972) 499-1832

www.prisms.org

1,2,3,6,8,9

Sotos Syndrome

SOTOS SYNDROME SUPPORT ASSOCIATION

P.O. Box 4626

Wheaton, IL 60189

(888) 246-SSSA

president@sotossyndrome.org

www.sotossyndrome.org

1,2,3,4,6 English, Spanish materials

Souques-Charcot Syndrome

See: Progeria

South African Genetic Porphyria

See: Liver Disorders; Porphyria

Spasmodic Dysphonia

See: Dystonia

Spasmodic Torticollis

See: Dystonia

Spasmodic Wryneck

See: Dystonia

Spastic Paraplegia, Familiar

See: Ataxia

Speech Disorders, Apraxia, Stuttering

CENTER FOR SPEECH AND LANGUAGE DISORDERS

310-D S. Main St.

Lombard, IL 60148

(630) 652-0200

(630) 652-0300

info@csld.org

www.csld.org

Sphingomyelin Lipidosis

See: Niemann-Pick Disease

Spielmeyer-Vogt Disease

See: Batten Disease

Spielmeyer-Vogt-Batten Syndrome

See: Batten Disease

Spina Bifida

SPINA BIFIDA ASSOCIATION

Juanita Panlener

P.O. Box 17427

Arlington, VA 22216

(800) 621-3141

(202) 944-3285

(202) 944-3295

sbaa@sbaa.org

www.spinabifidaassociation.org

1,2,3,4,5,6,7,8,9 English, Spanish materials, scholarship program

Spinal Cord Injuries, Paralysis

NATIONAL SPINAL CORD INJURY ASSOCIATION

120-34 Queens Blvd # 320

Kew Gardens, NY 11415

(800) 962-9629

(866) 387-2196

info@spinalcord.org

www.spinalcord.org

1,2,3,4,5,6,7

NSCIA

Eric Larson

75-20 Astoria Blvd., Suite 120

Jackson Heights, NY 11370

(718) 803-3782

(718) 512-0010

(866) 387-2196

www.spinalcord.org

1,2,3,4,5,7,8 English, Spanish

CHRISTOPHER & DANA REEVE FOUNDATION PARALYSIS RESOURCE CENTER

Angela Cantillon

636 Morris Turnpike, Suite 3A

Short Hills, NJ 07078

(800) 539 7309

infospecialist@ChristopherReeve.

org

www.christopherreeve.org

2,4 English, Spanish

Spinal Muscular Atrophy

CURE SMA

Kenneth Hobby

925 Busse Rd.

Elk Grove Village, IL 60007

(800) 886-1762

(847) 367-7620

(847) 367-7623

info@curesma.org

www.curesma.org

1,2,3,4,5,6,7,8,9 English, some

Spanish publications

Spinocerebellar Ataxia

See: Ataxia; Friedreich Ataxia

Splenic Anemia, Familial

See: Gaucher Disease

Spondyloepiphyseal 1 Dysplasia Tarda

See: Growth Disorders

Spondyloepiphyseal Dysplasia Congenita

See: Cleft Palate; Growth Disorders; Visual Impairments

SSPE

See: Subacute Sclerosing Panencephalitis

STAR Protein Deficiency

See: Adrenal Disorders

Steely Hair Disease

See: Menkes Disease

Stengel Syndrome

See: Batten Disease

Stengel-Batten-Mayou-Spielmeyer-Vogt Disease

See: Batten Disease

Stickler syndrome

STICKLER INVOLVED PEOPLE (SIP)

Pat Houchin

15 Angelina

Augusta, KS 67010

(316) 259-5194

sip@sticklers.org

www.Sticklers.org

1,2,6 English, French

Stroke

HEART AND STROKE FOUNDATION OF CANADA

Dave Gibson

222 Queen St. Ste 1402

Ottawa, ON K1P 5V9

(613) 569-4361

(888) 473-4636

(613) 569-3278

dgibson@hsf.ca

www.heartandstroke.ca

2,5,6,7,8,9 English, French

NATIONAL STROKE ASSOCIATION

Matt Lopez

9707 E Easter Lane Building B

Centennial, CO 80112

(800) STR-OKES

(800) 787-6537

(303) 649-1328

Info@stroke.org

www.stroke.org

1,2,3,4,6,7,8,9 English, Spanish

Sturge-Weber Syndrome, Klippel-Trenaunay Syndrome

STURGE-WEBER FOUNDATION (CANADA) INC

Kathleen Moore

1960 Prairie Ave

Port Coquitlam, BC V3B 1V4

(604) 942-9209

(604) 942-9209

sturge-weber@shaw.ca

www.sturge-weber.ca

1,2,3,4,6,7,8,9 English

STURGE-WEBER FOUNDATION (SWF)

Karen Ball

P.O. Box 418

Mount Freedom, NJ 07970-0418

(800) 627-5482

(973) 895-4445

(973) 895-4846

swf@sturge-weber.org

www.sturge-weber.org

1,2,3,4,6,8,9

Stuttering

STUTTERING FOUNDATION OF AMERICA

Jane Fraser

1805 Moriah Woods Blvd, Suite 3

P.O. Box 11749

Memphis, TN 38117-7119

(901) 761-0343

(901) 761-0484

info@stutteringhelp.org

www.stutteringhelp.org

1,2,4,5,7,8 English, Spanish

Subacute Necrotizing Encephalopathy

See: Mitochondrial Disorders

Subacute Sclerosing Panencephalitis

NATIONAL INSTITUTE OF NEUROLOGICAL

Story C. Landis Ph.D.

P.O. Box 5801

Bethesda, MD 20824

(800) 352-9424

(301) 496-5751

www.ninds.nih.gov

1,2,4,7 English, Spanish

Succinylcholine Sensitivity

See: Malignant Hyperthermia

Sudden Infant Death Syndrome (SIDS)

Baby's Breath

P.O. Box 21053

St. Catharines, ON L2M 7X2

(800) 363-7437

(905) 688-3300

info@babysbreathcanada.ca

www.babysbreathcanada.ca

1,2,3,4,5 English, French materials

NATIONAL SUID/SIDS RESOURCE CENTER

Rochelle Mayer Ed.D.

Georgetown University

2115 Wisconsin Avenue, N.W.Suite 601

Washington, DC 20007

(202) 687-7466

(202) 687-7466

(703) 821-2098

info@sidscenter.org

www.sidscenter.org

1,2,3,4 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, Chiari Malformation

ASAP: AMERICAN SYRINGOMYELIA & CHIARI ALLIANCE PROJECT

Patricia Maxwell

PO. Box 1586

Longview, TX 75606

(800) 272-7282

(903) 236-7079

(903) 757-7456

info@asap.org

www.asap.com

1,2,3,6,8 English

Systemic Elastorrhexis of Touraine

See: Pseudoxanthoma Elasticum (PXE)

Systemic Mast Cell Disease

See: Mast Cell Disease, Systemic

Tangier Disease

See: Tay-Sachs Disease

Target Cell Anemia

See: Cooley Anemia

Tarui Disease

See: Glycogen Storage Diseases; Muscular Dystrophy

Tay Syndrome

See: Ichthyosis

Tay-Sachs Disease

NATIONAL TAY-SACHS & ALLIED DISEASES ASSOCIATIOIN (NTSAD)

Ingrid S. Miller

2001 Beacon St., Suite 204

Brighton, MA 2135

(617) 277-4463

(617) 277-0134

info@ntsad.org

www.ntsad.org

1,2,3,4,5,6,7,8,9

TEF/VATER INTERNATIONAL SUPPORT NETWORK

Terri Burke

15301 Grey Fox Road

Upper Marlboro, MD 20772

(301) 952-6837

(301) 952-9152

tefvater@gmail.com

www.tefvater.org

1,2,3,7,8,9

Thalassemia Major

See: Cooley Anemia; Thalassemia Major

Thrombocytopenia Absent Radius (TAR) Syndrome

See: Heart Disorders; Kidney Disorders; Short Stature

Thyroid Disorders

THYROID FOUNDATION OF CANADA

Katherine Keen

PO. Box 298

Bath, ON K0H 1G0

(800) 267-8822

info@thyroid.ca

www.thyroid.ca

1,2,6,8 English, French

THYROID FOUNDATION OF AMERICA

Judy Pate

410 Stuart Street

Boston, MA 02116

(800) 832-8321

(617) 534-1500

(617) 534-1515

info@tsh.orgwww.allthyroid.org

1,2,4,6,7,8,9 English, Spanish

Torsion Dystonia, Idiopathic

See: Dystonia

Tourette Syndrome

TOURETTE SYNDROME ASSOCIATION, INC.

Tracy Flynn

42-40 Bell Boulevard, Suite 205

Bayside, NY 11361

(718) 224-2999

(718) 279-9596

ts@tsa-usa.org

www.tsa-usa.org

1,2,4,5,6,7,8 English, Spanish

TOURETTE SYNDROME FOUNDATION OF CANADA

Lynn McLarnon

5945 Airport Rd, Suite 195

Mississauga, ON L4V 1R9

(800) 361-3120

(905) 673-2255

(905) 673-2638

www.tourette.ca

1,2,4,5,6,8 English, Spanish, French

Toxic Paralytic Anemia

See: Anemia, Aplastic

Tricho-Dento-Osseous 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

Trichooculodermo-vertebral Syndrome

See: Ectodermal Dysplasias

Trichoodontoonychial Dysplasia

See: Ectodermal Dysplasias

Trichoodontoonychodermal Syndrome

See: Ectodermal Dysplasias

Trichoodontoonychodysplasia with Pili Torti

See: Ectodermal Dysplasias

TrichoodontoonychoHypohidrotic Dysplasia with Cataract

See: Ectodermal Dysplasias

Trichopoliodystrophy

See: Menkes Disease

(Trichorhinophalangeal) Syndrome, Type S I & II

See: Ectodermal Dysplasias

Trichotillomania

See: Obsessive-Compulsive Disorder

Triphalangeal ThumbsOnychodystrophy-Deafness

See: Ectodermal Dysplasias; Hearing Impairments

Trisomy 13

See: Chromosome 13 & 18 Disorders

Trisomy 18

See: Chromosome 13 & 18 DisordersTRP

Tuberous Sclerosis

TUBEROUS SCLEROSIS ALLIANCE

Gail Alexander

801 Roeder Rd, Suite 750

Silver Spring, MD 20910

(800) 225-6872

(301) 562-9890

(301) 562-9870

info@tsalliance.org

www.tsalliance.org

1,2,3,4,5,6,7,8,9 English, Spanish

Turcot Syndrome

See: Brain Tumors; Cancer Hereditary Colon Cancer

Turner Syndrome

TURNER SYNDROME SOCIETY OF CANADA

Wendy Gee

30 Cleary Avenue, Room 9

Ottawa, ON K2A 4A1

(613) 321-2267

(613) 321-2268

info@turnersyndrome.ca

www.turnersyndrome.ca

1,2,8,4,5,6 English, French materials

TURNER'S SYNDROME SOCIETY OF THE US

Cindy Dunham

11250 West Road #G

Houston, TX 77065

(800) 365-9944

(832) 912-6006

(832) 912-6446

tssus@turnersyndrome.org

www.turnersyndrome.org

1,2,3,5,6,7,9 Spanish materials

Twin to Twin Transfusion Syndrome

TWIN TO TWIN TRANSFUSION SYNDROME FOUNDATION

Mary Slaman-Forsyt

411 Longbeach Parkway

Bay Village, OH 44140

(800) 815-9211

(440) 899-8887

(440) 899-1184

info@tttsfoundation.org

www.tttsfoundation.org

1,2,3,4,5,7,8,9 English, Spanish, French, German

Twin-related diseases

TWIN HOPE, INC. SOUTHERN OFFICE

Paula Malone

411 Longbeach Parkway

Bay Village, OH 44140

(440) 899-8887

(800) 815-9211

info@tttsfoundation.org

www.tttsfoundation.org

1,2,3,4,7,8,9 English Spanish, German, French; family guides

Tyrosinemia, Hereditary, Hepatorenal Type/Tyrosinemia type I, tyrosyluria

See Kidney Disorders; Liver Disorders

Ulcerative Colitis

See: Crohn Disease & Colitis

Urea Cycle Disorders

NATIONAL UREA CYCLE DISORDERS FOUNDATION

Cynthia Le Mons

75 S. Grand Avenue

Pasadena, CA 91105

(626) 578-0833

(626) 578-0823

info@nucdf.org

www.nucdf.org

1,2,3,4,6,7,8,9 English, Spanish

Urologic Disorders

See: Incontinence; Kidney Diseases, Hereditary; Kidney Disorders

Urostomy

See: Ostomy

Urticaria Pigmentosa

See: Mast Cell Diseases

Ventilator Users

INTERNATIONAL VENTILATOR USERS NETWORK (IVUN)

Joan Headley

4207 Lindell Blvd, #110

St Louis, MO 63108-2930

(314) 534-0475

(314) 534-5070

info@ventusers.org

www.ventusers.org

1,2,3,7,8

Vacterl

THE VACTERL NETWORK

Josie Quijas

483 Melody Drive

Northglenn, CO 80260

(303) 880-3217

admin@vacterlnetwork.org

www.vacterlnetwork.org

2,6,7

Vater Association

See: VACTERL Association

Velo-Cardio-Facial Syndrome

22Q NATION

Maureen Anderson

23-1 Norfolk St.

Hampstead, NH 03841

(603) 489-1393

MLADJA@aol.com

2,3 English

Ventricular Defects

See: Heart Disorders

Vermis Cerebellar Agenesis

See: Joubert Syndrome

Vestibular disorders, Meniere's Disease, Labyrinthitis, BPPV

VESTIBULAR DISORDERS ASSOCIATION

Cynthia Ryan

5018 NE 15th Avenue

Portland, OR 97211

(800) 837-8428

(503) 229-8064

info@vestibular.org

www.vestibular.org

1,2,3,4,7

Visual Impairment/Hearing Impairment

See: Deaf-Blind

Visual Impairments

AMERICAN COUNCIL OF THE BLIND

Melanie Brunson

2200 Wilson Blvd, Suite 650, Arlington, VA 22201

(800) 424-8666

(202) 467-5081

(703) 465-5085

info@acb.org

www.acb.org

1,2,4,5,6,7 English

AMERICAN FOUNDATION FOR THE BLIND

Caitlin McFeely

2 Penn Plaza, Suite 1102

New York, NY 10121

(800) 232-5463

(212) 502-7600

(888) 545-8331

afbinfo@afb.net

www.afb.org

BLIND CHILDREN'S CENTER

Midge Horthon

4120 Marathon St, Los Angeles, CA 90029-3584

(800) 222-3566

(323) 664-2153

(323) 665-3828

info@blindchildrenscenter.org

www.blindchildrenscenter.org

1,2,9 English, Spanish

BLIND CHILDREN'S FUND

Diana Popp

PO. Box 187

Grand Ledge, MI 48837

(517) 488-4887

info@blindchildrensfund.org

www.blindchildrensfund.org

2,3,4 English

BRAILLE INSTITUTE OF AMERICA

741 N. Vermont Ave.

Los Angeles, CA 90029

(323) 663-1111

(800) BRA-ILLE (272 4553)

(323) 663-0867

la@brailleinstitute.org

www.brailleinstitute.org

3,4,5,6,7,8 English, some Spanish

COUNCIL OF FAMILIES WITH VISION IMPAIRMENT

Roy Ward

6212 W Franklin St

Richmond, VA 23226

(804) 288-0395

2,4,6,7 English

NATIONAL ASSOCIATION FOR PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS

Susan LaVenture

15 West 65th Street

New York, NY 10023

(800) 562-6265

napvi@lighthouseguild.org

1,2,3,5,6,7 English, Spanish

NATIONAL BRAILLE PRESS, INC.

Joanne Sullivan

88 St. Stephen St.

Boston, Ma 02115-4312

(617) 266-6160 ext 20

(888) 965-8965

(617) 437-0456

contact@nbp.org

www.nbp.org

1,2 Braille

PREVENT BLINDNESS AMERICA

Sue Corbett

211 West Wacker Dr, Suite 1700

Chicago, IL 60606

(800) 331-2020

(847) 843-2020

(312) 363-6052

info@preventblindness.org

www.preventblindness.org

1,2,3 English

VISION WORLD WIDE, INC.

Patricia L. Price

5707 Brockton Dr, Suite 302

Indianapolis, IN 46220-5481

(800) 431-1739

(317) 254-1332

(317) 251-6588

www.visionww.org

4

NATIONAL ORGANIZATION OF PARENTS OF BLIND CHILDREN

A Division of the National

Federation of the Blind

Carrie Gilmer

200 East Wells Street

Baltimore, MD 21230

(410) 659-9314,2360

(410) 685-5653

carrie.gilmer@gmail.com

www.nfb.org/nopbc

1,2,3,4,5,6,7

Visual Impairments Macular Diseases

FOUNDATION FIGHTING BLINDNESS

Mitsy Palmer

7168 Columbia Gateway Drive, Suite 100

Columbia, MD 21046

(410) 423-0600

(800) 683-5555

(410) 872-0438

info@FightBlindness.org

www.FightBlindness.org

1,2,4,5,6,8,9

Vitiligo

NATIONAL VITILIGO FOUNDATION (NVF)

11250 Cornell Park Dr, Suite 207 B

Cincinnati, OH 45242

(513) 793-6834

(513) 793-6887

info@nvfi.org

www.nvfi.org English

Von Gierke Disease

See: Glycogen Storage Diseases

Von Hippel-Lindau Syndrome

VON HIPPEL LINDAU FAMILY ALLIANCE

Joyce Graff

2001 Beacon St, Suite 208

Boston, MA 02135-7787

(617) 277-5667

(800) 767-4845

(858) 712-8712

info@vhl.orgwww.vhl.org

1,2,3,4,5,6,7,8,9 English, French, Spanish, German, Japanese

Von Recklinghausen Disease

See: Neurofibromatosis

Von Willebrand Disease

See: Hemophilia

WAGR Syndrome, Vision Impairment, Intellectual Disabilities

INTERNATIONAL WAGR SYNDROME ASSOCIATION

Shari Krantz

PO. Box 769

Hanover, PA 17331

(301) 370-8878

ReachingOut@wagr.org

www.wagr.org

1,2,3,4,6,7,9 English, Spanish

Walbaum-DeheaneSchlemmer Syndrome

See: Ectodermal Dysplasias

Walker-Warburg Syndrome

See: Hydrocephalus; Lissencephaly

Weber Syndrome

See: Sturge-Weber Syndrome

Wegener Granulomatosis

VASCULITIS FOUNDATION

PO. Box 28660

Kansas City, MO 64188-8660

(800) 277-9474

(816) 436-8211

vf@vasculitisfoundation.org

Werdnig-Hoffman Disease

See: Spinal Muscular Atrophy

Werlhof Disease

See: Purpura, Idiopathic Thrombocytopenia (ITP)

Wermer Syndrome

See: Multiple Endocrine Neoplasia

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

WILLIAMS SYNDROME ASSOCIATION

Mike C. McFall

570 Kirts Blvd, Suite 223

Troy, MI 48084

(800) 806-1871

(248) 244-2230

mmcfall@williams-syndrome.org

www.williamssyndrome.org

2,8 English

WILLIAMS SYNDROME ASSOCIATION

Terry Monkaba

570 Kirts Boulevard Suite 223

Troy, MI 48084

(800) 806-1871

(248) 244-2229

(248) 244-2230

info@williams-syndrome.org

www.williams-syndrome.org

1,2,3,6,7,8,9 English, Chinese, Spanish

Williams-Beuren Syndrome

See: Williams Syndrome

Wilm's Tumor

See: WAGR Syndrome, Genitalia, Ambiguous

Wilson's disease, Liver Disease

WILSON DISEASE ASSOCIATION

Mary Graper

5572 North Diversey Blvd

Milwaukee, WI 53217

(866) 961-0533

(414) 961-0533

info@wilsonsdisease.org

www.wilsonsdisease.org

1,2,3,4,6,7,8,9 English, Spanish

Wish Organizations

CHILDREN'S WISH FOUNDATION INTERNATIONAL

Linda Dozoretz

8615 Roswell Rd.

Atlanta, GA 30350-7526

(800) 323-9474

(770) 393-9474

(770) 393-0683

info@childrenswish.org

www.childrenswish.org

1,2,3 English

Wiskott-Aldrich Syndrome

See: Immune Disorders; PurpuIdiopathic Thrombocytopenia

Wolf Syndrome

See: Wolf-Hirschhorn Syndrome

Xanthogranulomatosis, Juvenile

See: Histiocytosis

Xeroderma Pigmentosum, UV Sensitivity

XP SOCIETY

437 Snydertown Rd

Craryville, NY 12521

(518) 851-3466

xps@xps.orgwww.xps.org

1,2,3,4,7,8 English, Spanish

Xeroderma-Talipes-Enamel Defect

See: Ectodermal Dysplasias

X-Linked Copper Malabsorption

See: Menkes Disease

X-Linked Myotubular Myopathy

See: Myotubular Myopathy, XLinked; Muscular Dystrophy

Zanier-Roubicek Syndrome

See: Ectodermal Dysplasias

Zellweger Syndrome

See: Leukodystrophy

Ziehen-Oppenheim Disease

See: Dystonia

KEY TO SERVICES

1. Periodical/newsletter

2. Informational materials

3. Networking/matching

4. Referrals to local resources

5. Local chapters

6. National conferences

7. National advocacy efforts

8. Fund research

9. Maintain research registry
COPYRIGHT 2016 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2016 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Publication:The Exceptional Parent
Article Type:Directory
Geographic Code:1USA
Date:Jan 1, 2016
Words:19771
Previous Article:God's instrument of love.
Next Article:Adaptive recreation organizations.
Topics:

Terms of use | Privacy policy | Copyright © 2019 Farlex, Inc. | Feedback | For webmasters