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National resources for specific disabilities.

THIS DIRECTORY INCLUDES NATIONAL GROUPS and organizations that can serve as resources for parents and professionals seeking information and support about specific disabilities and conditions. Please note that information on some specific disabilities may also be available from Federal and Fderally-Funded Information Resources (see 76 for additional listings), Parent to Parent Programs (see page 83), or certain National Information and Advocacy Resources (see page 70). Matching Resources may also be useful (see page 44).

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), crossreferencing 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 2014.

1-[beta]-Hydroxylase Deficiency

See: Adrenal Disorders

17-20-Desmolase Deficiency

See: Adrenal Disorders

17-alpha-Hydroxylase Deficiency

See: Adrenal Disorders

17-Hydroxylase Deficiency

See: Adrenal Disorders

21-Hydroxylase Deficiency

See: Adrenal Disorders

3-[beta]-Hydroxysteroid Dehydrogenase Deficiency

See: Adrenal Disorders

45, X Syndrome

See: Turner's Syndrome;

Albinism and Hypopigmentation

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

See: Klinefelter Syndrome

A-Beta-Lipoproteinem ia

See: Tay-Sachs Disease

Abdominal Migraine

See: Cyclic Vomiting Syndrome

Achondroplasia

See: Growth Disorders

Acid Maltase Deficiency

See also: Glycogen Storage

Diseases; Pompe Disease

NEW HAMPSHIRE DEPARTMENT OF EDUCATION

Bureau of Special Education

Barbara J. Raymond,

101 Pleasant Street,

Concord, NH 03301

(603) 271-6693

(603) 271-3791

(603) 271-1099 (FAX)

Santina.Thibedeau@doe.nh.gov

www.education.nh.gov/instructio

n/special_ed/indexTitm

THE CANAVAN RESEARCH FOUNDATION

88 Route 37

New Fairfield, CT 06812

(203) 746-2436

(203) 746-3205

info@canavan.org

www.canavan.org/ English

THYROID FOUNDATION OF CANADA

P.O. Box 298

Bath, ON, K4M 1A2

(800) 267-8822

(514) 630-9815 (FAX)

info.tfc1800@gmail.com

www.thyroid.ca English, French

Acidemia, Isovaleric (IVA)

See: Acidemia, Organic

Acidemia, Organic Metabolic Disorders

ORGANIC ACIDEMIA ASSOCIATION

Kathy Stagni

13210 35th Avenue North

Plymouth, MN 55441

(763) 559-1797

(866) 539-4060

kstagni@oaanews.org

www.oaanews.org

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

Acoustic Neuroma

ACOUSTIC NEUROMA ASSOCIATION OF CANADA

Melanie Sexsmith

PO Box 114

Dunnville, ON N1A 2X1

(800) 561-2622

(800) 561-2622

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-BardetBiedl Syndrome

Adrenocorticotropic

Hormone Deficiency

See: Adrenal Disorders; Pituitary

Disorders/Tumors

Adrenogenital Syndrome

See: Adrenal Disorders

Adrenoleukodystrophy

See: Leukodystrophy;

Tay-Sachs Disease

Agenesis of the Corpus

Callosum

ACC Network

Kathy Schilmoeller

5766 Shibles Hall

Orono, ME 04469-5766

(207) 581-3651

(207) 581-1110

(207) 581-3120 (FAX)

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 (FAX)

info@nodcc.org

www.nodcc.org

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

Agyria

See: Lissencephaly

Aicardi Syndrome

See also: Agenesis of the Corpus

Callosum; Epilepsy; Visual

Impairments

AICARDI SYNDROME NEWSLETTER

1510 Polo Fields Ct

Louisville,KY 40245

(502) 244-9152

www.Aicardisyndrome.org

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

AIDS

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

1600 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

See also: Heart Disorders;

Liver Disorders

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 and

Hypopigmentation

See also: Visual Impairments

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 (FAX)

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 (FAX)

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

Alopecia-OnychodysplasiaHypohidrosis

See: Ectodermal Dysplasias

Alpha-1-Antitrypsin

(AAT) Deficiency

See also: Liver Disorders;

Lung Diseases

ALPHA-1 ASSOCIATION

Bob Campbell

3300 Ponce de Leon Blvd.

Coral Gables, FL 33134

(877) 228-7321, Ext. 230

(305) 648-0088

(305) 648-0089 (FAX)

rcampbell@alpha1.org

www.alpha1.org

www.alpha1.org

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

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

Amelocerebrohyphohidrotic

Syndrome

See: Ectodermal Dysplasias

Ameloonychohyphohidrotic

Dysplasia

See: Ectodermal Dysplasias

Amniotic Bands

See: Craniofacial Disorders

Amputation

See also: Limb Disorders

AMERICAN AMPUTEE FOUNDATION

Catherine J. Walden

PO Box 94227

Little Rock, AR 72190

(501) 835-9290

(501) 835-9292 (FAX)

info@americanamputee.org

www.americanamputee.org

AMPUTEE COALITION OF AMERICA

Melanie Staten

900 East Hill Avenue, Suite 290,

Knoxville, TN 37915-2566

(888) 267-5669 ext.8114

(865) 525-4512

(865) 525-7917 (FAX)

acainfo@amputee-coalition.org

www.amputee-coalition.org

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

materials available

NATIONAL AMPUTATION FOUNDATION

Laurie Romano

40 Church Street

Malverne, NY 11565

(516) 887-3600

(516) 887-3667 (FAX)

amps76@aol.com

www.nationalamputation.org

1,2,3,4 English

Amsterdam Dwarf

Syndrome

of de Lange

See: Cornelia de Lange

Syndrome

Amylo-1, 6-Glucosidase

Deficiency

See: Glycogen Storage Diseases;

Muscular Dystrophy

Amylopectinosis

See: Glycogen Storage Diseases

Amyoplasia, Congenita

See: Arthrogryposis Multiplex

Congenita

Anal Atresia

See: Anorectal Malformations

Anal Stenosis

See: Anorectal Malformations

Andersen Disease

See: Glycogen Storage Diseases

Anderson-Fabry Disease

See: Fabry Disease

Anderson-Warburg

Syndrome

See: Norrie Disease

Anemia, Aplastic

See also: Anemia, Fanconi; Bone

Marrow Transplant

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 (FAX)

help@aamds.org

www.aamds.org

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

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 (FAX)

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

See also: Anemia, Aplastic; Heart

Disorders; Leukemia

FANCONI ANEMIA RESEARCH FUND, INC.

Laura Hays

1801 Willamette Street, Suite

200

Eugene, OR 97401

(541) 687-4658

(888) 326-2664

(541) 687-0548 (FAX)

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, Mediterranean

See: Cooley Anemia/

Thalassemia Major

Anemia, Refractory

See: Anemia, Aplastic

Anemia, Target Cell

See: Cooley Anemia/

Thalassemia Major

Anemia, Toxic Paralytic

See: Anemia, Aplastic

Angelman Syndrome

See also: Epilepsy

ANGELMAN SYNDROME FOUNDATION

Sheila Wenger

75 Executive Drive, Suite 327

Aurora, IL 60504

(800) 432-6435

(630) 978-4245

(630) 978-7408 (FAX)

swenger@angelman.org

www.angelman.org

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

CANADIAN ANGELMAN SYNDROME SOCIETY

PO Box 37

Priddis, AB T0L 1WO

(403) 931-2415

info@AngelmanCanada.org

www.angelmancanada.org/

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

Angio-Osteohypertrophy

Syndromi

See: Klippel-Trenaunay

Syndrome

Angiokeratoma Coporis

Diffusum

See: Fabry Disease

Angiomatosis Retina

See: Von Hippel-Lindau

Syndrome

Aniridia

See also: Visual Impairments,

WAGR Syndrome

ANIRIDIA NETWORK INTERNATIONAL

Hannah James

109 Gavin Way

Colchester, UK CO4 9FR

440-120-6842742

hannah@aniridia.org

2,3,4 English,

Ankylosing Spondylitis,

Juvenile

See: Arthritis

Anophthalmia

See also: Visual Impairments

INTERNATIONAL CHILDREN'S ANOPHTHALMIA NETWORK

Tanya Bardakjian

Genetics, Levy 2 West

5501 Old York Rd

Philadelphia, PA 19141

(800) 580-ICAN

(215) 456-2356 (FAX)

ican@anophthalmia.org

www.anophthalmia.org

1,2 English, Spanish

Anorectal Malformations

See also: Colon Disease;

Intestinal Pseudo-Obstruction

Syndrome

PULL-THRU NETWORK

Lori Parker

1705 Wintergreen Parkway

Normal, IL 61761

(309) 262-0786

PullthruNetwork@gmail.com

www.pullthrunetwork.org/index.php

1,2,3,6,7 Email discussion group,

weekly member chat

Anorexia Nervosa

Includes bulimia nervosa and

binge-eating disorder

NATIONAL ASSOCIATION OF ANOREXIA NERVOSA AND ASSOCIATED DISORDERS

Laura Discipio

PO 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

Lynn Grefe

165 West 46th Street, Suite 402

New York, NY 10036

(212) 575-6200

(800) 931-2237

(212) 575-1650 (FAX)

info@NationalEatingDisorders.org

www.nationaleatingdisorders.org

1,2,4,6,7,8,9 Includes bulimia

nervosa & binge-eating disorder

APECED Syndrome

See: Ectodermal Dysplasia;

Hypoparathyroidism

Apert Syndrome

See also: Craniofacial Disorders

APERT INTERNATIONAL, INC.

Cathie Sears

PO Box 2571

Columbia, SC 29202

(803) 732-2372

info@apert-international.org

www.apert.org

Listserv support

TEETER'S PAGE

P.O Box 2571

Columbia, SC 29202

(803) 732-2372

catndon@apert.org

www.apert.org

Aphasia, Acquired

See also: Brain Injury; Stroke

NATIONAL APHASIA ASSOCIATION

350 Seventh Ave, Suite 902

New York, NY 10001

(800) 922-4622

(212) 267-2812 (FAX)

naa@aphasia.org

www.aphasia.org

2,3,4,6,9 Chinese, Creole,

English, Greek, Hebrew, Italian,

Korean

Aplastic Anemia

See: Anemia, Aplastic

Apnea, Infantile

See: Apnea, Sleep

Apnea, Sleep

AMERICAN SLEEP APNEA ASSOCIATION

6856 Eastern Avenue, NW Ste. 203

Washington, DC 20012

(202) 293-3650

(202) 722-7674 (FAX)

asaa@sleepapnea.org

www.sleepapnea.org

7 English

Apraxia

See also: Learning Disabilities

CHERAB. FOUNDATION, INC. RESEARCH, APRAXIA BASE FOUNDATION

Lisa Geng

PO Box 8524

Communication Help, Education,

Research, Apraxia Base

Port St. Lucy, FL 34952-8524

(772) 335-5135

(772) 337-4812 (FAX)

help@cherab.org

www.cherab.org

3,4,5,6,7 English

Arthritis

ARTHRITIS FOUNDATION, NEW JERSEY CHAPTER

Lorna Krkich

555 Route 1 South, Suite 320

Iselip, NJ, 08830

(888) 467-3112

(732) 283-4300

(732) 283-4633 (FAX)

info.nj@arthritis.org

www.arthritis.org

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

ARTHRITIS SOCIETY

393 University Ave., Ste. 1700

Toronto, ON M5G 1E6

(800) 321-1433

(416) 979-8366

info@on.arthritis.ca

www.arthritis.ca/ontario English,

French

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

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 (FAX)

NIAMSinfo@mail.nih.gov

www.niams.nih.gov

2,8,9 English, Spanish

Aqueductal Stenosis

See: Hydrocephalus

Arachnodactyly

See: Marfan Syndrome

Aregenerative Anemia

See: Anemia, Aplastic

Arginase Deficiency

See: Urea Cycle Disorders

Argininosuccinase

Deficiency

See: Urea Cycle Disorders

Argininosuccinic Acid

Synthetase Deficiency

See: Urea Cycle Disorders

Argininosuccinic Aciduria

See: Urea Cycle Disorders

Arnold Chiari Malformation

See also: Syringomyelia

Arteriohepatic Dysplasia

See: Alagille Syndrome

Arteriovenous

Malformations (AVMs)

See: Epilepsy; Stroke; Vascular

Malformations

Arthro-opthalmopathy

See: Stickler Syndrome Arthritis

Arthrochalasis Multiplex

Congenita

See: Ehlers-Danlos Syndrome

Arthrogryposis Multiplex

Congenita

See also: Growth Disorders;

Muscular Dystrophy

AVENUES: A NATIONAL SUPPORT GROUP FOR ARTHROGRYPOSIS MULTIPLE CONGENITA

Jim Schmidt

PO Box 5192

Sonora, CA 95370

(209) 928-3688

avenues@sonnet.com

www.avenuesforamc.com

2,3,4,9 English, Spanish

Asthma & Allergy

ASTHMA AND ALLERGY FOUNDATION OF AMERICA

Bill McLin

8201 Corporate Drive

Landover, MD 20785

(800) 727-8462

(202) 466-7643

(202) 466-8940 (FAX)

info@aafa.org

www.aafa.org

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

materials available

ALLERGY & ASTHMA NETWORK MOTHERS OF ASTHMATICS

8201 Greensboro Drive,

Suite 300

McLean, VA 22102

(800) 878-4403

(703) 641-9595

(703) 288-5271 (FAX)

www.aanma.org/

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

ASTHMA SOCIETY OF CANADA

Dr. Robert Oliphant

124 Merton Street, Suite 401

Toronto, ON M4S 2Z2

(866) 787-4050

(416) 787-4050

(416) 787-5807 (FAX)

info@asthma.ca

www.asthma.ca

1,2,3 English

Ascending Paraylsis

See: Guillain-Barre Syndrome

Asperger's Disorder

See: Autism

Asperger Syndrome

See: Autism

Asthma

See: Asthma and Allergy

Asthma and Allergy

See also: Food Allergy; Latex

Allergy; Lung Diseases

THE ASTHMA AND ALLERGY FOUNDATION OF AMERICA

8201 Corporate Drive

Landover, MD 20785

(800) 727-8462

(202) 466-7643

(202) 466-8940 (FAX)

info@aafa.org

www.aafa.org

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

available in English, Spanish

ASTHMA SOCIETY OF CANADA

Melva Bellefountaine

124 Merton Street, Suite 401

Toronto, ON

CAN M4S 2Z2

(866) 787-4050

(416) 787-4050

(416) 787-5807 (FAX)

info@asthma.ca

www.asthma.ca

1,2,3 English

Ataxia

See also: Friedreich Ataxia

NATIONAL ATAXIA FOUNDATION

2600 Fernbrook Ln, Suite. 119

Minneapolis, MN 55447

(763) 553-0020

(763) 553-0167 (FAX)

naf@ataxia.org

www.ataxia.org

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

Ataxia, Telangiectasia

See also: Ataxia; Autoimmune

Disorders; Cancer; Immune

Disorders; Leukemia

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 (FAX)

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

Atresia

See: Microtia

Atrial Septal Defects

See: Heart Disorders

Atrophia Bulborum

Hereditaria

See: Norrie Disease

Attention Deficit Disorder

ATTENTION DEFICIT DISORDER ASSOCIATION

PO Box 103

Denver, PA 17517

(800) 939-1019

(800) 939-1019 (FAX)

info@add.org

www.add.org

1,2,3,6 English

ATTENTION DEFICIT DISORDER RESOURCES

Megan McDonald

1818 Westlake Ave. N. Ste 229

Seattle, WA 98109

(206) 724-0599

(253) 572-3700 (FAX)

office@addresources.org

www.addresources.org

1,2,3,4,5, Some material

available in Spanish

ATTENTION DEFICIT DISORDER RESOURCES

Cynthia Hammer

223 Tacoma Av So #100

Tacoma, WA 98402

(253) 759-5085

(253) 572-3700 (FAX)

www.addresources.org

Attention-Deficit/

Hyperactivity Disorder

CHADD-CHILDREN AND ADULTS WITH ATTENTION-DEFICIT/HYPERACTIVITY

DISORDERS

Tim MacGeorge

8181 Professional Place,

Suite 150

Landover, MD 20785

(301) 306-7070

(800) 233-4050

(301) 306-7090 (FAX)

conference@chadd.org

www.chadd.org

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

Attenuated Adenomatous

Polyposis Coli

See: Colon Cancer, Hereditary

Auditory Neuropathy

See: Kernicterus

Auriculo-Oculo-Vertebral

Syndrome

See: Goldenhar Syndrome

Autism

See also: Autism and Sensory

Impairments; Purine Metabolic

Disorders; Intellectual Disability;

Asperger Syndrome; Fetal

Alcohol Syndrome/Effect;

Heart Disorders

AUTISM NATIONAL COMMITTEE

Anne Bakeman

3 Bedford Green

South Burlington, VT 05403

(781) 648-1813

sandra.mcclennen@emich.edu

www.autcom.org

1,2,3,6 English, very little

Spanish

AUTISM NETWORK FOR HEARING AND VISUALLY IMPAIRED PERSONS, AUTISM RESEARCH INSTITUTE

Dr. Stephen Edelson

4183 Adams Avenue

San Diego, CA 92116

(877) 644-1184 ext. 5

(866) 366-3361

(877) 644-1181 (FAX)

d.bartel@cox.net

www.auiism.com/fhearing

2,3,4,6,9 English

AUTISM NEW JERSEY

Suzanne Buchanan, Psy.D., BCBA-D

500 Horizon Drive Suite 530

Robbinsville, NJ 08691

(609) 588-8200

(800) 4AU-TISM

(609) 588-8858 (FAX)

information@autismnj.org

www.autismnj.org

1,2,4,6 English, Spanish

AUTISM RESEARCH INSTITUTE

Stephen M. Edelson

4182 Adams Ave

San Diego, CA 92116

(877) 644-1184 ext. 5

(866) 366-3361

(877) 644-1181 (FAX)

HearingVisionNetwork@autism.com

www.aut sm.com//hear ng

2,3,4,6,,9 English

AUTISM SPEAKS

Autism Response Team

1 East 33rd Street, 4th Floor

New York, NY 10016

(888) 288-4762

(212) 252-8676 (FAX)

familyservices@autismspeaks.org

www.autismspeaks.org

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

AUTISM TREATMENT CENTER OF AMERICA[TM] HOME OF THE SON-RISE PROGRAM[R]

Bryn N. Hogan

2080 S. Undermountain Rd

Sheffield, MA, 01257

(877) 776-7473

(413) 229-8063 (FAX)

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 (FAX)

info@kennedykrieger.org

www.kennedykrieger.org

1,2,4,8

NATIONAL AUTISM HOTLINE/AUTISM SERVICES CENTER

Ruth Sullivan

929 4th Avenue, 2nd Floor

Prichard Building, PO Box 507

Huntington, WV 25701

(304) 525-8014

(304) 525-8026 (FAX)

jmoss@a utismwv.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 (FAX)

info@researchautism.org

www.researchautism.org

1,2,6,8 English, Spanish

TEACCH

Box 7180

University of North Carolina

Chapel Hill, NC 27599-7180

(919) 966-2174

(919) 966-4127 (FAX)

www.teacch.com

THE AUTISM SOCIETY

Scott Badesch

4340 East West Highway,

Suite 350

Bethesda, MD 20814

(301) 657-0881

(800) 328-8476

(301) 657-0869 (FAX)

info@autism-society.org

www.autism-society.org/

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

phone and on website

YALE CHILD STUDY CENTER

Rosa Maccio

c/o Evelyn Pomichter

230 South Frontage Road

PO Box 207900

New Haven, CT 06519

(203) 785-2540

(203) 764-5663 (FAX)

dd.clinic@yale.edu.

www.autism.fm

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

Autism, Asperger

Syndrome, and Pervasive

Developmental 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 (FAX)

prattc@indiana.edu

www.iidc.indiana.edu/irca

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

Korean

MAAP SERVICE FOR AUTISM AND ASPERGER SYNDROME

Susan Moreno

PO Box 524

Crown Point, IN 46307

(219) 662-1311

info@maapservices.org

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

Autoimmune Myocarditis

See: Autoimmune Disorders

Autoimmune Rheumatic

Diseases

See: Scleroderma

Autoimmune Disorders

AMERICAN AUTOIMMUNE RELATED DISEASES ASSOCIATION (AARDA)

Virginia Ladd

22100 Gratiot Ave

Eastpointe, MI 48021-2227

(586) 776-3900

(586) 776-3903 (FAX)

aarda@aarda.org

www.aarda.org

1,2,7,8

B12 Metabolism,

Inborn Error of

See: Cobalamin (B12) Defiency

Baisch Syndrome

See: Ectodermal Dysplasias

Balance Disorders &

Dizziness

See also: Vestibular Disorders

EAR FOUNDATION

Susan Wyatt

955 Woodland Street

Nashville, TN 37206-3753

(615) 627-2724

(615) 329-7809

(615) 329-7935 (FAX)

www.earfoundation.org

Bannayan, Ruvalcaba, Rileysmith

Syndrome

See: Sotos Syndrome

Bardet-Biedl Syndrome

See: Laurence-Moon-Bardet-Biedl

Syndrome

Barth Syndrome

See also: Heart Disorders;

Neutropenia; Short Stature

THE BARTH SYNDROME FOUNDATION, INC

Shelley Bowen

PO Box 618

Larchmont, NY 10538

(850) 273-6947

(518) 213-4061 (FAX)

bsfinfo@barthsyndrome.org

www.barthsyndrome.org

1,2,6,8,9 English, German,

Spanish, French, Italian, Dutch,

Portugese

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 (FAX)

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 (FAX)

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 Street

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 (FAX)

BWCFKathy@comcast.net

www.beckwithwiedemannsyndrome.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 also: 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 (FAX)

info@lighthouse.org

www.lighthouse.org

1,2,4,7 English, Spanish

Bone Marrow Dysfunction

See also: Cancer

SHWACHMAN DIAMOND SYNDROME FOUNDATION

PO Box 40

Avon, NY 14414

(888) 825-7373

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

2310 Skokie Valley Rd., Ste 104

Highland Park, IL 60035

(888) 597-7674

(847) 433-3313

(847) 433-4599 (FAX)

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

Syndrome/GERD/Fecal

Incontinence/Motility

Disorders

See also: Gastrointestinal

Disorders

INTERNATIONAL FOUNDATION FOR FUNCTIONAL GASTROINTESTINAL DISORDERS (IFFGD)

700 W. Virginia St., Ste. 201

Milwaukee, WI 53204-1549

(414) 964-1799

(888) 964-2001

(414) 964-7176 (FAX)

IFFGD@iffgd.org

www.iffgd.org

1,2,6,7,8 English

Brachial Plexus Injury

See: Erb's Palsy

Brachmann-de Lange

Syndrome

See: Cornelia de Lange

Syndrome

Brain Attack

See: Stroke

Brain Injury

See also: Aphasia, Acquired

BRAIN INJURY ASSOCIATION OF AMERICA

Greg Ayotte

1608 Spring Hill Rd., Suite 110

Vienna, VA 22182

(703) 761-0750 ext. 642

(800) 444-6443

(703) 761-0755 (FAX)

braininjuryinfo@biausa.org

www.biausa.org

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

Brain Injury; Traumatic/

Acquired

RECOVERY ASSOCIATION

Georgina McKee RN.,MA.

8300 Republic Airport

Suite 106

Farmingdale, NY 11735

(631) 756-1826

(631) 756-1827 (FAX)

inquiry@comarecovery.org

www.comarecovery.org

3,2,4,1,7

Brain Stem Malformations

See: Arnold-Chiari Malformation;

Joubert Syndrome;

Syringomyelia

Brain Tumors

See also: Acoustic Neuroma;

Brain Injury; Cancer; Epilepsy;

Pituitary Disorders/Tumors;

Von Hippel-Lindau Syndrome

AMERICAN BRAIN TUMOR ASSOCIATION

8550 W Bryn Mawr, Ste. 550

Chicago, IL 60631

(800) 886-ABTA2282

(773) 577-8750

(773) 577-8738 (FAX)

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 (FAX)

info@braintumorkids.org

www.braintumorkids.org

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

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 (FAX)

kgiacin@cbtf.org

www.cbtf.org

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

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 (FAX)

braintumour@braintumour.ca

www. braintumour.ca

NATIONAL BRAIN TUMOR FOUNDATION

Harriet Patterson

22 Battery St., Ste. 612

San Francisco, CA 94111-5520

(415) 834-9970

(800) 934-2873

(415) 834 9980 (FAX)

www.braintumor.org

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

French

NATIONAL BRAIN TUMOR SOCIETY

Dawn Grenier

124 Watertown St., Suite 2D

Watertown, MA 02472

(617) 924-9997 ext. 105

(800) 770-8287

(617) 924-9998 (FAX)

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 (FAX)

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

Camptomelic Syndrome

See: Growth Disorders;

Short Stature

Canavan Disease

See also: Leukodystrophy;

Tay-Sachs Disease

THE CANAVAN RESEARCH FOUNDATION

Fairwood Professional Building

New Fairfield, CT 06812

(203) 746-2436

(203) 746-3205 (FAX)

canavanresearch@aol.com.

www.canavan.org/

English

Cancer

See also: Bone Marrow

Transplant; Brain Tumors; Colon

Cancer, Hereditary; Leukemia;

Lymphedema; Polyposis

CHILDREN'S CANCER AND BLOOD FOUNDATION

Jennifer Zaleski

333 East 38th Street, Suite 830

New York, NY 10016

(212) 297-4336

(212) 297-4340

www.childrenscbf.org

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 (FAX)

info@childhoodcancer.ca

CANADIAN CANCER SOCIETY NATIONAL OFFICE

55 St. Clair Avenue West,

Suite 300

Toronto, ON M4V 2Y7

(416) 961-7223

(416) 961-4189 (FAX)

ccs@cancer.ca

www.cancer.ca

2,7,8 English, French

CANDLELIGHTERS CHILDHOOD CANCER FOUNDATION

Ruth Hoffman

10400 Connecticut Ave., Suite A

Kensington, MD 20895

(855) 858-2226

(301) 962-3520

(301) 962-3521 (FAX)

www.acco.org

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

CURESEARCH NATIONAL CHILDHOOD CANCER FOUNDATION

Laura Thrall

4600 East West Highway, #600

Bethesda, MD 20814-3457

(800) 458-6223

(301) 718-0042

(301) 718-0047 (FAX)

info@curesearch.org

www.nccf.org

1,2,6 English

THE 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 English, Spanish

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 also: Acidemia, Organic;

Fatty Oxidation Disorder;

Mitochondrial Disorders;

Muscular Dystrophy

Carnitine Palmityl

Transferase Deficiency

See: Acidemia, Organic;

Fatty Oxidation Disorders;

Mitochondrial Disorders;

Muscular Dystrophy

Carpenter Syndrome

See: Craniofacial Disorders

Cartilage-Hair Hypoplasia

See: Dwarfism; Growth

Disorders; Short Stature

Cartilagenous Enchondroses, Multiple

See: Ollier Disease

Cat's Cry Syndrome

See: Cri Du Chat Syndrome

Causalgia Syndrome

See: Reflex Sympathetic

Dystrophy Syndrome

Celiac Disease

See also: Celiac Sprue; Gluten

Intolerance

Canadian Celiac Association

Margot Alward

5170 Dixie Rd,Ste 204

Mississauga, ON L4W 1E3

(800) 363-7296

(905) 507-6208

(905) 507-4673 (FAX)

Celiac Disease/Dermatitis

Herpetiformes

CELIAC DISEASE FOUNDATION

20350 Ventura Blvd Ste 240

Woodland Hills, CA 91364

(818) 716-1513

(818) 267-5577 (FAX)

cdf@celiac.org

www.celiac.org

English, Spanish

Celiac Sprue

See also: Celiac Disease;

Gluten Intolerance

AMERICAN CELIAC SOCIETY DIETARY SUPPORT COALITION

Annette Bentley

PO Box 23455

New Orleans, LA 70183-0455

(504) 305-2968

(504) 305-2970 (FAX)

americanceliacsociety@yahoo.com

www.americanceliacsociety.org

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

Spanish, Italian

CELIAC SUPPORT ASSOCIATION

Mary Schleckebier

PO Box 31700

Omaha, NE 68131-0700

(877) 272-4272

(402) 558-0600

(402) 643-4108 (FAX)

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

KENNEDY KRIEGER INSTITUTE HELPS CENTER FOR CEREBRAL PALSY AND NEURO DEVELOPMENTAL MEDICINE

Roger Abounader

707 N. Broadway

Baltimore, MD 21205

(443) 923-9200

(800) 873-3377

(443) 923-9405 (FAX)

www.kennedykrieger.org

MATHENY MEDICAL & EDUCATIONAL CENTER

Deborah Andreoni

65 Highland Ave

PO Box 339

Peapack, NJ 07977

(908) 234-0011 ext. 237

(908) 719-2137 (FAX)

admissions@matheny.org

www.matheny.org

2,7 English, 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 (FAX)

www.ofcp.ca

1,2,3,4,6.7,8

UCP (UNITED CEREBRAL PALSY)

O'Ryan Case, MPH

1825 K Street NW, Suite 600

Washington, DC 20006

(800) 872-5827

(202) 776-0406

(202) 776-0414 (FAX)

info@ucp.org

www.ucp.org

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

UNITED CEREBRAL PALSY ASSOCIATION OF GREATER INDIANA

Donna L Roberts

107 N. Pennsylvania St.,

Suite 804

Indianapolis, IN 46204

(317) 632-3561

(317) 632-3338 (FAX)

ucpa@ucpaindy.org

www.ucpaindy.org

English, some Spanish materials

UCP KIDS (UNIQUE COMMUNITY PROGRAMS FOR KIDS)

Dori Ortman

4638 Centre Avenue

Pittsburgh, PA 15213

(412) 683-7100

(888) 954-2424

(412) 683-4160 (FAX)

info@ucpclass.org

www.ucppittsburgh.org

1,2,3,4,7

UNITED CEREBRAL PALSY OF NEW YORK CITY

80 Maiden Lane 8th Floor

New York, NY 10038-4811

(877) 827-2666

(212) 683-6700

(212) 951-7124 (FAX)

projectconnect@ucpnyc.org

www.ucpnyc.org

1,2,4

Cerebrooculorenal

Dystrophy

See: Lowe Syndrome

Cerebroside Lipidosis

See: Gaucher Disease

Cerebrotendinous

See: Leukodystrophy;

Tay-Sachs Disease

Chagas' Disease

See: Autoimmune Disorders

Chalasodermia

See: Connective Tissue

Disorders

Chanarin-Dorfman

Syndrome

See: Ichthyosis

CHANDS Association

See: Ectodermal Dysplasias

Charcot-Marie-Tooth

Disease

See also: Ataxia; Muscular

Dystrophy; Myelin Disorders;

CHARCOT-MARIE-TOOTH ASSOCIATION

Pat Dreibelbis

PO Box 105

Glenolden, PA 19036

(800) 606-2682

(610) 499-9264

(610) 499-9267 (FAX)

info@cmtausa.org

www.cmtausa.org

English, Spanish

CHARGE Syndrome

CHARGE SYNDROME FOUNDATION, INC.

318 Half Day Rd. #305

Buffalo Grove, IL 60089

(516) 684-4720

(800) 442-7604

(516) 883-9060 (FAX)

info@chargesyndrome.org

www.chargesyndrome.org

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

Childhood Apraxia of

Speech, Speech Disorder

THE CHILDHOOD APRAXIA OF SPEECH ASSOCIATION

Kathy Bauer

416 Lincoln Avenue 2nd Floor,

Pittsburgh, PA 15209

(412) 343-7102

www.apraxia-kids.org

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

website articles in Spanish

Chediak Higashi syndrome

See: Hermansky-Pudlak

Syndrome

Chemke Syndrome

See: Hydrocephalus;

Lissencephaly

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 13 and 18 Disorders

See also: Chromosome 1

Disorders

SUPPORT ORGANIZATION FOR TRISOMY 18,13 AND RELATED DISORDERS (SOFT)

Barbara Van Herreweghe,

President

2982 S Union Street

Rochester, NY 14624

(800) 716-7638

(585) 594-4621

barbsoft@rochester.rr.com

www.trisomy.org

1,2,3,5,6,8 English, 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 49,XXXXY

See: Klinefelter Syndrome

Chromosome 9 Ring

See: Chromosome Deletions;

Craniofacial Disorders

Chromosome Abnormalities

See: Genetic Disorders

Chromosome 4

See also: Wolf-Hirschhorn

Syndrome

4P-SUPPORT GROUP

Wendy Trout

2159 128th St.

New Richmond, WI 54017

(715) 248-3937

(503) 661-7546 (FAX)

wendy_trout2@yahoo.com

www.4p-supportgroup.org

1,2,3,6,9

Chromosome 5p

See: Cri Du Chat Syndrome

Chromosome 15

DUP15Q ALLIANCE

Kadi Luchsinger

PO Box 674,

Fayetteville, NY 13066

(187) (855) DUP15QA

info@dup15q.org

www.idic15.org

Chromosome 18 & 13/

Related Disorders

SOFT: SUPPORT ORGANIZATION FOR TRISOMY 18, 13 AND RELATED DISORDERS

Barbara VanHerreweghe

2982 S Union St

Rochester, NY 14624

(800) (716) SOFT7638

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 (FAX)

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 H8 9EE

+44(01)883 330766

info@rarechromo.org

www.rarechromo.org

1.2.3.5.6.9 English, some

material in French, German

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 8p Disorders

8P DUPLICATION SUPPORT GROUP

Faith Callif-Daley

Genetics Ctr. 1 Children's Plaza

Dayton, OH 45404

(937) 641-5645

(937) 641-5325 (FAX) English

Chromosome 9 Disorders

TRISOMY 9 INTERNATIONAL PARENT SUPPORT

4027 E. Piedmont Dr.

Highland, CA 92346

(909) 862-4470

(909) 862-4470 (FAX)

atoddna@sprynet.com

3 English

Chromosome Deletions,

Trisomies, Translocations,

Inversions/All Rare

Chromosome Disorders

Chromosome Disorder Outreach,

Inc. (CDO)

Linda Sorg

PO Box 724

Boca Raton, FL 33429-0724

561-395-4252

561-395-4252 (FAX)

info@chromodisorder.org

www.chromodisorder.org

1,2,3,4,9 English

Chromosome Inversions

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 (FAX)

cfids@cfids.org

www.cfids.org

1,2,8

Chronic Inflammatory

Demyelinating

Polyneuropathy

See: Autoimmune Disorders

Chronic Inflammatory

Demyelinating

Polyradiculoneuropathy

See: Guillain-Barre Syndrome

Chronic Localized

Encephalitis

See: Rasmussen Syndrome

Citrullinemia

See: Urea Cycle Disorders Cleft

Palate; See also: Craniofacial

Disorders

Cleft Palate

CLEFT PALATE FOUNDATION

Stephanie Williamson, MS

1504 E. Franklin Street, Suite

102

Chapel Hill, NC 27514-2820

(800) 242-5338

(919) 933-9044

(919) 933-9604 (FAX)

info@cleftline.org

www.cleftline.org

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

CMV, Congenital

See: Cytomegalovirus (CMV),

Congenital

Cockayne Syndrome

See also: Growth Disorders;

Xeroderma Pigmentosum

SHARE AND CARE/COCKAYNE SYNDROME NETWORK

PO 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

SIDNEY KIMMEL COMPREHENSIVE CANCER CENTER

Kathy Romans

Johns Hopkins University

550 N Broadway Suite 108

Baltimore, MD 21231

(410) 955-3875

(410) 955-6787 (FAX)

hccregistry@jhmi.edu

www.hopkinskimmelcancercenter

.org

1,2,3,9

Complex Regional

Pain Syndrome

See: Reflex Sympathetic

Dystrophy Syndrome

Congenital Adrenal

Hyperplasia (CAH)

See also: Adrenal Disorders

CARES FOUNDATION INC

Dina Matos

2414 Morris Ave Ste 110

Union, NJ 07083

(908) 364-0272

(866) 227-3737

(908) 686-2019

dina@caresfoundation.org

www.caresfoundation.org

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

Congenital Lipoid

Hyperplasia

See: Adrenal Disorders

Congenital Sensory

Neuropathy with

Anhidrosis

See: Familial Dysautonomia

Connective Tissue

Disorders

See also: Ehlers-Danlos

Syndrome; Epidermolysis

Bullosa, Dystrophic; Marfan

Syndrome; Pseudoxanthoma

Elasticum (PXE)

COALITION FOR HERITABLE DISORDERS OF CONNECTIVE TISSUE

382 Main Street

Port Washington, NY 11050

(800) 862-7326

(516) 883-8712

(516) 883-8040 (FAX)

staff@marfan.org

www.marfan.org

2,7

Conradi-Hunermann

Syndrome

See: Growth Disorders; Ichthyosi

Cooley Anemia/

Thalassemia major

See also: Autoimmune Disorders

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,

some material in Spanish &

Greek

THALASSEMIA ACTION GROUP

Jesal Kapasi

330 7TH Ave Suite 900

New York, NY 10001

(800) 522-7222

(212) 279-5999 (FAX)

info@cooleysanemia.org

www.cooleysanemia.org

1,2

THALASSEMIA FOUNDATION OF CANADA

Riyad Elbard

338 Falstaff Ave Suite 204

North York, ON M6L 2E8

(416) 242-THAL8425

info@thalassemia.ca

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

materials in French

Copper Deficiency, X-Linked

See: Menkes Disease

Copper Malabsorption, X-Linked

See: Menkes Disease

Cori Disease

See: Glycogen Storage Diseases;

Muscular Dystrophy;

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome

Foundation

Marie Malloy

302 W Main St #100

Avon, CT 06001

(800) 753-2357

(860) 676-8166

(860) 676-8337 (FAX)

info@cdlsusa.org

www.CdLSusa.org

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

materials

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 (FAX)

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 (FAX)

areeves@ccakids.com

contactCCA@ccakids.com

www.ccakids.org

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

CRANIOSYNOSTOSIS AND POSITIONAL PLAGIOCEOHALY SUPPORT INC. (CAPPS)

Jennifer Pitchke

6905 Xandu Court

Fredericksburg, VA 22407

540-786-9563

(845) 454-5902

www.cappskids.org/

1,2,5,7 English

FACES-THE NATIONAL CRANIOFACIAL ASSOCIATION

Lynne Mayfield, President

PO Box 11082

Chattanooga, TN 37401

(800) 3FA-CES3

(423) 267-3124 (FAX)

faces@faces-cranio.org

www.faces-cranio.org

1,2,3,4

MYFACE:

333 East 30th Street, Lobby Unit

New York, NY 10016

(212) 263-6656

(212) 263-7534 (FAX)

info@myface.org

www.myface.org

1,2 English

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 (FAX)

faceit@umich.edu

www.dent.umich.edu/faceit

1,2 English

NATIONAL FOUNDATION FOR FACIAL RECONSTRUCTION

Carolyn Spector

333 East 30th Street, Lobby Unit

New York, NY 10016

(212) 263-6656

(917) 544-2100

(212) 263-7534 (FAX)

info@nffr.org

www.nffr.org

1,2,7,8 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

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 (FAX)

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

386 Park Avenue South

17th Floor

New York, NY 10016

(800) 932-2423

(212) 679-1570

(212) 779-3557 (FAX)

info@ccfa.org

www.ccfa.org

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

CROHN'S & COLITIS FOUNDATION OF AMERICA

Erin Stoeber

733 Third Avenue, Suite 510

New York, NY 10017

(347) 899-5479

(212) 779-4098

info@ccfa.org

www.ccfa.org

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

Crouzon Disease

See: Craniofacial Disorders

Curly Hair

Ankyloblepharon

Nail Dysplasia (CHANDS)

See: Ectodermal Dysplasias

Cushing Syndrome

See: Adrenal Disorders

Cutis Hyperelastica

See: Ehlers-Danlos Syndrome

Cutis Laxa

See: Connective Tissue Disorders

Cyclic Vomiting Syndrome

CYCLIC VOMITING SYNDROME ASSOCIATION

10520 W Bluemound Road,

Suite #106

Milwaukee, WI 53226

(414) 342-7880

(414) 342-8980 (FAX)

cvsa@cvsaonline.org

www.cvsaonline.org

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

Cystic Fibrosis

CYSTIC FIBROSIS FOUNDATION

Shirley Windsor

6931 Arlington Road, 2nd floor

Bethesda, MD 20814

(800) 344-4823

(301) 951-4422

(301) 951-6378

info@cff.org

www.cff.org

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

CYSTIC FIBROSIS CANADA

Diana Ginsberg

2221 Yonge St, Ste 601

Toronto, ON M4S 2B4

(800) 378-2233

(416) 485-9149

(416) 485-0960 (FAX)

info@cysticfibrosis.ca

www. cysticfibrosis. ca

1.2.5.8 English, French

Cystinosis, Fanconi

Syndrome

CYSTINOSIS RESEARCH NETWORK

Christy Greeley

302 Whytegate Court

Lake Forest, IL 60045

(866) 276-3669

(847) 735-0471

(847) 235-2773 (FAX)

info@cystinosis.org

www.cystinosis.org

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

Cystinosis

See Kidney Disorders

Cystinuria

See also: Kidney Disorders

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), Congenital

Congenital disabilities assoicated

with above disease

NATIONAL CONGENITAL CMV DISEASE REGISTRY

Gail J. Demmler-Harrison MD

Texas Children's Hospital

Feigin Center, Suite 1150

1102 Bates St,

Houston, TX 77030

(832) 824-4387

(832) 825-4347 (FAX)

cmv@bcm.edu

www.bcm.tmc.edu/pedi/infect/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

Deaf and Hard of Hearing

NATIONAL ASSOCIATION OF THE DEAF

Chris Wagner

8630 Fenton Street, Suite 820

Silver Spring, MD 30910

(301) 587-1788

(301) 587-1789

(301) 587-1791 (FAX)

nad.info@nad.org

www.nad.com

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

Sign Language

Darier Disease

See: Ichthyosis

De Barsey Syndrome

See: Connective Tissue Disorders

De Barsey-MOENSDIERCKS

Syndrome

See: Connective Tissue Disorders

De Morsier Syndrome

See: Septo-Optic Dysplasia

Deaf-Blind

See also: Hearing Impairments;

Visual Impairments

AMERICAN ASSOCIATION OF THE DEAF-BLIND

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

(800) 438-9376

(800) 854-7013

(503) 838-8150 (FAX)

info@nationaldb.org

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

Dermatomyositis

See: Arthritis; Muscular

Dystrophy; Myositis

Dermoodontodysplasia

See: Ectodermal Dysplasias

Dermotrichic Syndrome

See: Ectodermal Dysplasias

Developmental Disabilities

See: Intellectual Disability

Diabetes inspidus

See also: Autoimmune Disorders

Diabetes Mellitus

See also: Autoimmune Disorders;

Kidney Disorders

AMERICAN DIABETES ASSOCIATION-CENTER FOR INFORMATION AND COMMUNITY SUPPORT

1701 N. Beauregard St.

Alexandria, VA 22311

(703) 549-1500

(800) DIA-BETES

(703) 549-6995 (FAX)

AskADA@diabetes.org

www.diabetes.org

1,2,3.4.5,6,7,8,9English, Spanish

CANADIAN DIABETES ASSOCIATION NATIONAL OFFICE

1400-522 University AVE

Toronto, ON M5G 2R5

(800) BAN-TING2268464

(416) 363-3373

info@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 Pseudo-Obstruction

Syndrome

Dimorsier Syndrome

See: Growth Disorders

Discoid Lupus

See: Autoimmune Disorders

Down Syndrome

See also: Intellectual Disability

ACDS (ASSOCIATION FOR CHILDREN WITH DOWN SYNDROME)

Michael M. Smith

4 Fern Place

Plainview, NY 11803

(516) 933-4700 ext. 204

(516) 933-9524 (FAX)

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 (FAX)

info@cdss.ca

www.cdss.ca

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 (FAX)

www.aboutchanges.com

FOUNDATION FOR CHILDREN WITH DOWN SYNDROME

Aleta R. Capel

1502 S Michigan Ave. Bldg 12

Suite 3

Joplin, MD 64804

(417) 626-8603

www.volunteermatch.org/search/

org31782.jsp

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

INTERNATIONAL MOSAIC DOWN SYNDROME ASSOCIATION (IMDSA)

Brandy Hellard

PO Box 354

Trenton, OH 45067

(513) 571-4186

(888) MDS-LINK

(775) 295-9373 (FAX)

president@imdsa.org

www.imdsa.org

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

Portuguese

KENNEDY KRIEGER INSTITUTE DOWN SYNDROME CLINIC

Roger Abounader

707 N. Broadway

Baltimore, MD 21205

(800) 873-3377

(443) 923-9400

(443) 923-9405 (FAX)

intake@kennedykrieger.org

www.kennedykrieger.org

KENNEDY WILLIS CENTER AT PATHFINDER VILLAGE

Helen E. Stepowany

3 Chenango Rd.

Edmeston, NY 13335-2314

(607) 965-8377 ext. 117

(607) 965-8655 (FAX)

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 (FAX)

info@ndsccenter.org

www.ndsccenter.org

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

NATIONAL DOWN SYNDROME SOCIETY

Vanessa Quick

666 Broadway, 8th Floor

New York, NY

10012

(800) 221-4602

(212) 763-4364

(212) 979-2873 (FAX)

info@ndss.org

www.ndss.org

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

TRISOMY 21 RESEARCH FOUNDATION

Joanne Stewart

933 First Colonial Rd., Ste. 109

Virginia Beach, VA

23454

(757) 425-1969

(757) 425-1822 (FAX)

2,6,7,8 English

Dual Sensory Impairments

See: Deaf-Blind

Dubowitz Syndrome

See also: Craniofacial Disorders;

Growth Disorders

DUBOWITZ SYNDROME PARENT SUPPORT NETWORK

Ruth Kimberly

PO Box 2441

Vincennes, IN

47591

(812) 886-6875

(812) 886-1128 (FAX)

jkearns@charter.net

www.dubowitz.org

2,4,6,7 English

Duchenne, Muscular

Dystrophy

See also: Muscular Dystrophy

PARENT PROJECT MUSCULAR DYSTROPHY

Ryan Fischer

401 Hackensack Ave, 9th Floor

Hackensack, NJ 07601

(201) 250-8440

(800) 714-5437

(201) 944-9987 (FAX)

pat@parentprojectmd.org

www.parentprojectmd.org

1,2,3, English, Spanish

Dwarfism

See also: Growth Disorders;

Short Stature

BILLY BARTY FOUNDATION

Lisa Luken

10222 Crosby Road

Harrison, OH

45030-9733

(513) 738-4428

(513) 385-2468

info@billybartygolfclassic.com

KNIEST SED GROUP

Cecilie Birner

support@ksginfo.org

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

LITTLE PEOPLE OF AMERICA

Joanna Campbell

250 El Camino Real, Suite 211

Tustin, CA 92780

(714) 368-3689

(888) LPA-2001

(714) 368-3367 (FAX)

info@lpaonline.org

www.lpaonline.org

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

METATROPIC DWARF REGISTRY

Shirley Figone

3393 Geneva Dr

Santa Clara, CA 95051

(408) 244-6354

(408) 296-6317 (FAX)

figone@netgate.net

2,3,4,9 English

Dysautonomia

See also: Familial Dysautonomia

NATIONAL DYSAUTONOMIA RESEARCH FOUNDATION (NDRF)

Daniel P. Smith

PO Box 301

Red Wing, MN

55066-0301

(651) 267-0525

(651) 267-0524 (FAX)

ndrf@ndrf.org

www.ndrf.org

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

Dysautonomia, Familial

See: Familial Dysautonomia

Dysgenesis of the

Corpus Callosum

See: Agenesis of the

Corpus Callosum

Dyskeratosis, Congenital

See: Ectodermal Dysplasias

Dyslexia

See also: Attention Deficit

Disorder; Learning Disabilities

DYSLEXIA RESEARCH INSTITUTE

Dr. Patricia K. Hardman

5746 Centerville Rd

Tallahassee, FL 32309

(850) 893-2216

(850) 893-2440 (FAX)

dri@talstar.com

www.dyslexia-add.org

7,9

THE INTERNATIONAL DYSLEXIA ASSOCIATION

40 York Rd, 4th Floor

Baltimore, MD 21204

(410) 296-0232

(800) 222-2123

(410) 321-5069 (FAX)

info@interdys.org

www.interdys.org

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

RECORDING FOR THE BLIND & DYSLEXIC

20 Roszel Rd

Princeton, NJ 08540

(800) 803-7201

(800) 221-4792

(609) 987-8116

Custserv@LearningAlly.org

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, Congenital

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

(416) 488-6974

dystonia@dystonia

foundation.org

www.dystonia-foundation.org

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

Dystrophic Epidermolysis Bullosa

See: Epidermolysis Bullosa,

Dystrophic; Connective Tissue

Disorders

Eaton-Lambert Syndrome

See: Muscular Dystrophy

Ectodermal Dysplasias

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 (FAX)

info@nfed.org

www.nfed.org

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

Ectrodactyly-Ectodermal

Dysplasia-Cleft Lip/

Palate (EEC) Syndrome

See: Cleft Palate; Craniofacial

Disorders; Ectodermal Dysplasias

EEC Syndrome

See: Cleft Palate; Craniofacial

Disorders; Ectodermal Dysplasias

Ehlers-Danlos Syndrome

See also: Connective Tissue

Disorders; Glaucoma; Visual

Impairments

EHLERS-DANLOS NATIONAL FOUNDATION

Shane Robinson

7918 Jones Branch Dr, Suite 300

Suite 1601, South Tower

McLean, VA 22102

(703) 506-2892

(703) 506-3266 (FAX)

ednfstaff@ednf.org

www.ednf.org

1,2,3,6,7,8

EHLERS-DANLOS NATIONAL FOUNDATION

1760 Old Meadow Road,

Suite 500

McLean, VA 22102

(703) 506-2892

(703) 506-3266 (FAX)

ednfstaff@ednf.org

www.ednf.org

1,2,3,6,7,8

EHLERS-DANLOS NATIONAL FOUNDATION

Cindy Lauren

3200 Wilshire Boulevard

Suite 1601, South Tower

Los Angeles, CA 90010

(213) 368-3800

(213) 427-0057 (FAX)

www.ednf.org

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

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

Encephalitis, Chronic

Localized

See: Rasmussen Syndrome

Epilepsy, Chronic

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-Barre Syndrome

Encephalotrigeminal Angiomatosis

See: Sturge-Weber Syndrome

Enchondromatosis, Enchondroses

See: Ollier Disease

Endocardial Fibroslastosis

See: Heart Disorders

Enteropathy, Gluten-Sensitive

See: Celiac Disease; Celiac

Sprue; Gluten Intolerance

Eosinophilic Granuloma

See: Histiocytosis

Epicanthus Inversus

See: Blepharophimosis, Ptosis,

Epicanthus Inversus Syndrome

(BPES)

Epidermolysis Bullosa,

Dystrophic

See also: Connective

Tissue Disorders

DEBRA OF AMERICA, INC.

Brett Kopelan, ED

75 Broad St, Suite 300

New York, NY 10004

(212) 868-1573

(866) 332-7276

(212) 868-9296 (FAX)

staff@debra.org

www.debra.org

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

Epilepsy

See also: Seizure Disorders

AMERICAN EPILEPSY SOCIETY

M. Suzanne Berry

342 North Main St.

West Hartford, CT 06117-2507

(860) 586-7505 ext. 510

(860) 586-7550 (FAX)

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 (FAX)

jaime@epilepsy.ca

www.epilepsy.ca

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

EPILEPSY FOUNDATIONNATIONAL 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's Palsy

BRACHIAL PLEXUS/ERB'S PALSY SUPPORT AND INFORMATIONAL NETWORK INC.

Brenda Copeland-Moore

PO Box 23

Larsen, WI 54947

(920) 836-9587

inationalbpi@powernet

online.com

www.nbpepa.org

1,2,3,4,5,6

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

Erythroid Hypoplasia,

constitutional

See: Anemia, Diamond-Blackfan

Erythrohepatic Protoporphyria

See: Liver Disorders; Porphyria

Erythrokeratodermias

See: Ichthyosis

Erythrophagocytic Lymphohistiocytosis, 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 (FAX)

info@essentialtremor.org

www.essentialtremor.org

1.2.4.7.8 Spanish

Evans Syndrome

See Autoimmune

Disorders; Neutropenia

Exomphalos-Macroglossia-Gigantism (EMG)

Syndrome

See: Beckwith-Wiedemann

Syndrome

Exostoses, Multiple

Hereditary

THE MHE COALITION

Chele Zelina

6783 York Road, Apt. 104

Parma Heights, OH 44130-4596

(440) 842-8817

(440) 821-5038 (FAX)

CheleZ1@yahoo.com

www.mhecoalition.org

1.2.6.8.9 English, some materials

in Spanish, Italian, German,

Japanese

MHE AND ME

Susan Wynn

PO Box 651

Pine Island, NY 10969-0651

(845) 258-6058

mheandme@yahoo.com

www.mhecoalition.org

1,2,3,4 English, Spanish, Italian,

German

Fabry Disease

See also: Tay-Sachs Disease

FABRY SUPPORT AND 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 (FAX)

info@fabry.org

www.fabry.org

1,9

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

INTERNATIONAL CENTER FOR FABRY DISEASE

Mount Sinai School of Medicine

Department of Genetics and

Genomic Sciences

Dana Doheny

Box 1498, Fifth Avenue

at 100th Street

New York, NY 10029

(212) 659-6780

(212) 265-6779

(212) 659-6779

dana.doheny@mssm.edu

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

Facial Disfigurement

See: Craniofacial Disorders

ABOUTFACE INTERNATIONAL

1057 Steeles Ave. West

PO Box 702

North York, ON M2R 3X1

(416) 597-2229 ext. 21

(800) 665-3223

(416) 597-8494 (FAX)

info@aboutface.ca

www.aboutface.ca

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

FacioScapuloHumeral

Muscular Dystrophy

FSH SOCIETY, INC.

Nancy Van Zant

64 Grove Street

Watertown, MA 02472

(617) 658-7878

(617) 658-7879 (FAX)

nancy.vanzant@fshsociety.org

www.fshsociety.org

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

Familial Ataxia

See: Ataxia; Friedreich Ataxia

Familial Adenomatous

Polyposis

See: Colon Cancer, Hereditary

Familial Dysautonomia

See also: Dysautonomia

DYSAUTONOMIA FOUNDATION, INC.

David Brenner

315 West 39th Street, Suite 701

New York, NY 10018

(212) 279-1066

(212) 279-2066 (FAX)

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 also: Metabolic Disords

Female Sex

Chromosome Disorders

See: Turner Syndrome

Fetal Alcohol

Syndrome/Effect

See also: Autism

FAMILY EMPOWERMENT NETWORK (FEN)

University of Wisconsin

Madison School of Medicine and

Public Health

Raina Zwadzich

1100 Delaplaine Court

Madison, WI 53715

(608) 262-6590

(800) 462-5254

(608) 263-5813 (FAX)

Family.EmpowermentNetwork@f

ammed.wisc.edu

www.pregnancyandalcohol.org

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

NATIONAL ORGANIZATION ON FETAL ALCOHOL SYNDROME (NOFAS)

Andy Kachor

1200 Eton Court N.W., 3rd Floor

Washington, DC 20007

(202) 785-4585 ext. 213

(800) 66N-OFAS

(202) 466-6456 (FAX)

Info@nofas.org

www.nofas.org

1,2,4,7 English, Spanish

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 07601

(201) 740-7069

(201) 488-8724 (FAX)

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 (FAX)

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

See also: Opitz 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-Barre Syndrome

Fischer-Jacobsen-Clouston Syndrome

See: Ectodermal Dysplasias

Focal Dermal Hypoplasia (FDH) Syndrome

See: Craniofacial Disorders;

Ectodermal Dysplasias; Hearing

Impairments

Folate Metabolism; Inborn Error of

See: Cobalamin (B12) Defiency

Food Allergy

See also: Asthma and Allergy

THE FOOD ALLERGY AND ANAPHYLAXIS NETWORK

11781 Lee Jackson Hwy., Ste. 160

Fairfax, VA 22033-3309

(800) 929-4040

(703) 691-2713 (FAX)

faan@foodallergy.org

www.foodallergy.org

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

Forbes Disease

See: Glycogen Storage Diseases;

Muscular Dystrophy

Fragile X Syndrome

See also: Attention Deficit

Disorder; Autism; Learning

Disabilities

FRAXA RESEARCH FOUNDATION

Katie Clapp

10 Prince Place, Suite 203

Newburyport, MA 01950

(978) 462-1866

info@fraxa.org

www.fraxa.org

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

NATIONAL FRAGILE X FOUNDATION

Linda Sorensen

615 Bonanza St. Suite 202

Walnut Creek, CA 94596

(800) 688-8765

(925) 938-9300

(925) 938-9315 (FAX)

nfxf@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

See also: Craniofacial Disorders;

Muscular Disorders

FREEMAN-SHELDON PARENT SUPPORT GROUP

509 East Northmont Way

Salt Lake City, UT 84103

(801) 364-7060

info@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

See also: Metabolic Disorders;

Liver Disease

GALACTOSEMIA FOUNDATION, FORMERLY PARENTS OF GALACTOSEMIC CHILDREN

Michele Fowler

PO Box 2401

Mandeville, LA 70470-2401

(186) 690-0PGC1

board@galactosemia.org

www.galactosemia.org

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

Gardner Syndrome

See: Colon Cancer, Hereditary;

Polyposis

Gastroesophageal Reflux, GERD

See also: Intestinal Pseudo-Obstruction

Syndrome

PEDIATRIC ADOLESCENT GASTROESOPHAGEAL REFLUX ASSOCIATION

Elizabeth Pulsifer-Anderson

Silver Spring, MD 20907

(301) 601-9541

gergroup@aol.com

www.reflux.org

1,2,3,5,8 Some materials in

Spanish

Gastrointestinal Disorders

THE OLEY FOUNDATION

Katie Swensen

Albany Medical Center

43 New Scotland Ave, MC 28

Albany, NY 12208

(518) 262-5079

(800) 776-OLEY (6539)

(518) 262-5528 (FAX)

bishopj@mail.amc.edu

www.oley.org

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

Gaucher Disease

See also: Genetic disease,

lysosomal storage disorders

NATIONAL GAUCHER FOUNDATION

Rhonda Buyers

2227 Idlewood Road,Suite 6

Tucker, GA 30084

(800) 504.3189

(770) 934-2910

(770) 934-2911 (FAX)

ngf@gaucherdisease.org

www.gaucherdisease.org

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

Russian

General

CHILDREN'S DEFENSE FUND

Allison Buist

25 E St. NW

Washington, DC 20001

(800) CDF-1200

(202) 628-8787

(202) 662-3510 (FAX)

www.childrensdefense.org

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

Genee-Wiedemann

Syndrome

See: Nager and Miller Syndrome

Genetic Disorders

See also: Lymphedema;

Rare Disorders; Chromosome

Disorders; Velo-Cardio-Facial

Syndrome (22q11 deletion)

ASSOCIATION OF GENETIC SUPPORT OF AUSTRALASIA INC. (AGSA)

66 Albion St

Surry Hills, Australia NSW 2010

(610) 292-111462

(610) 292-118077 (FAX)

dianne@agsageneticsupport.org.au

www.agsa-geneticsupport.org.au

1,2,3,4,7 Genetic factsheets,

newsletters, resource info.annual

VCFS EDUCATIONAL FOUNDATION, INC.

Dianne M. Altuna

PO Box 12591

Dallas, TX 75225

(855) 800-8237

info@vcfsef.org

www.vcfsef.org

1.2.3.4.5.6.7 English, limited

referrals for other languages

GENETIC ALLIANCE

Sharon Terry

4301 Connecticut Ave. NW, Suite 404

Washington, DC 20008-2369

(202) 966-5557

(202) 966-8553

www.geneticalliance.org

3,6,7 English

Genitalia, Ambiguous

See also: Hermaphroditism

Ambiguous Genitalia

AMBIGUOUS GENITALIA SUPPORT NETWORK (AGSN)

PO Box 313

Clements, CA 95227-0313

(209) 727-0313

esagsn@hotmail.com

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. Ste. 600

San Francisco, CA 94108

(800) 826-6693

(415) 986-3162

(415) 986-3763 (FAX)

question@glaucoma.org

www.glaucoma.org

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

Galactosemia

GALACTOSEMIA FOUNDATION

Michele Fowler

PO Box 2401

Mandeville, LA 70470-2401

(866) 900-7421

scott.shepard@galactosemia.org

www.galactosemia.org

1.2.3.4.6.7.8 English

Glucosyl Cerebroside

Lipidosis

See: Gaucher Disease

Glutaric Aciduria, Type I

See also: Acidemia, Organic;

Lactic Acidosis

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

See also: Celiac Disease;

Celiac Sprue

GLUTEN INTOLERANCE GROUP

Nancy Kloberdanz, Executive

Office Assistant

31214 124th Ave SE

Auburn, WA, 98092-3667

(253) 833-6655, ext 103

(253) 833-6675 (FAX)

nancy.kloberdanz@gluten.net

www.gluten.net

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

PO Box 896

Durant, IA 52747

(563) 514-4022

(563) 514-4022 (FAX)

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

See also: Immune Disorders

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

See also: Dwarfism;

Short Stature

HUMAN GROWTH FOUNDATION

Patricia Costa

997 Glen Cove Ave Ste. 5

Glen Head, NY 11545

(800) 451-6434

(516) 671-4041

(516) 671-4055 (FAX)

hgf1@hgfound.org

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

See also: Autoimmune Disorders

GBS/CIDP FOUNDATION INTERNATIONAL

The Holly Building,

104-1/2 Forrest Avenue

Narberth, PA 19072

(610) 667-0131

(866) 224-3301

(610) 667-7036 (FAX)

www.gbs-cidp.org

GBS/CIDP FOUNDATION OF CANADA

Donna Hartlen

3100 Garden Street

PO Box 80060

RPO Rossland Garden,

Whitby, ON L1R 0H1

(1) 647-560-6842

donna.hartlen@gbscidpcanada.org

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

Hay-Wells Syndrome

See: Cleft Palate; Craniofacial

Disorders; Deaf-Blind;

Ectodermal Dysplasias; Hearing

Impairments; Visual Impairments

Hayden Syndrome

See: Ectodermal Dysplasias

Head Injury

See: Brain Injury

Hearing Impairments

See also: Deaf-Blind

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 (FAX)

info@agbell.org

www.agbell.org

1,2,3,4,5,6,7 English, 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 (FAX)

asdc@deafchildren.org

www.deafchildren.org

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

AMERICAN SPEECHLANGUAGE, HEARING ASSOCIATION

2200 Research Blvd

Rockville, MD 20850-3289

(301) 296-5700

(800) 498-2071

(301) 296-8590 (FAX)

actioncenter@asha.org

www.asha.org

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

AUDITORY-VERBAL INTERNATIONAL, INC.[R] (AVI)

Scott Smiley

2121 Eisenhower Ave., Suite 402

Alexandria, VA 22314

(703) 739-1049

(703) 739-0874

(703) 739-0395 (FAX)

audiverb@aol.com

www.auditory-verbal.org

GALLAUDET UNIVERSITY

Dan Wallace

800 Florida Avenue, NE

Washington, DC 20002

(202) 651-5050

(202) 651-5704 (FAX)

gallaudet.edu/

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

HEARING HEALTH FOUNDATION

Andrea Boidman

363 7th Ave, 10th Floor

New York, NY 10001-3904

(212) 257-6140

(866) 454-3924

(212) 257-6139 (FAX)

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

(800) 388-8612

(213) 484-2642

(213) 483-8789 (FAX)

info@hei.org

www.hei.org

1,2,3 English, Spanish

NATIONAL CUED SPEECH ASSOCIATION (NCSA)

Sarina Roffe

1300 Pennsylvania Ave NW

Suite 190-713

Washington, DC 20004

(800) 459-3529

(800) 459-3529 (FAX)

info@cuedspeech.org

www.cuedspeech.org

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

communication for children by

developing language

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 (FAX)

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 (FAX)

westabro@nygh.on.ca

www.nygh.on.ca

1,2,3,4,6 Auditory-verbal

services for children who are

deaf

THE STARKEY HEARING FOUNDATION HEAR NOW PROGRAM

6700 Washington Ave. S

Eden Prairie, MN 55344

(800) 328-8602 ext. 2358

952-947-4997 (FAX)

nonprofit@starkey.com

www.starkeyhearingfoundation.org

1,2,7 Accepts tax-deductible

donations of used hearing aid

BETTER HEARING INSTITUTE

Sergei Kochkin

1444 I St., NW, Ste 700

Washington, DC 20005

(202) 449-1100

(202) 216-9646 (FAX)

mail@betterhearing.org

www.betterhearing.com

1,2,4,7 English

THE CANADIAN HEARING SOCIETY

Karen MacKenzie

271 Spadina Road

Toronto, ON M5R 2V3

(877) 347-3427

(877) 216-7310

(416) 928-2506 (FAX)

info@chs.ca

www.chs.ca

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

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

Heart Disorders

See also: Developmental

Disabilities; Down Syndrome

AMERICAN HEART ASSOCIATION

7272 Greenville Ave

Dallas, TX 75231

(214) 373-6300

(800) AHA-USA1

Review.personal.info@heart.org

Spanish

Heart Disorder, Lung

CHASER: CONGENITAL HEART ANOMALIES-SUPPORT, EDUCATION AND RESOURCES

Anita Myers

2112 N. Wilkins Rd,

Swanton, OH 43558

(419) 825-5575

(419) 825-2880 (FAX)

www.csun.edu/~hcmth011 /chase

r/chaser-news.html

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

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

Michelle Rintamaki

1578 Careful Drive

Green Bay, WI 54304

(800) 538-5390

(920) 498-0058

(800) 538-5390 (FAX)

michelle@kidswithheart.org

www.kidswithheart.org

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

NATIONAL HEART, LUNG, & BLOOD INSTITUTE INFORMATION CENTER

PO Box 30105

Bethesda, MD 20824-0105

(301) 592-8573

(800) 877-8339

(301) 592-8563 (FAX)

NHLBIinfo@nhlbi.nih.gov

www.nhlbi.nih.gov

1,2,8 English, Spanish

Hemangioma

See:also Craniofacial

Disordersvascular 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 (FAX)

jdubiel@aol.com

www.novanews.org

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

Spanish

Hemidysplasia, Unilateral

See: Ichthyosis

Hemifacial Microsomia

See: Goldenhar Syndrome

Hemihypertrophy

See: Beckwith-Wiedeman

Syndrome

Hemiplegia, Alternating

See also: Epilepsy; Seizure

Disorders; Hemiplegia; Dystonia

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION

Lynn Egan, Vice President,

Parent Support

239 Nevada Street

Redwood City, CA 94062

(165) 036-557

(650) 365-5798 (PHONE/FAX)

lynn@ahckids.org

www.ahckids.org

1,2,3,8

Hemiplegia

See also: Stroke

ALTERNATING HEMIPLEGIA OF CHILDHOOD FOUNDATION (AHCF)

Sharon Ciccodicola

Lynn Egan

2000 Town Center, Suite 1900

Southfield, MI 48075

(650) 365-5798

(650) 796-1910

(650) 365-5798 (FAX)

ahcfoundation@ahckids.org

www.ahckids.org

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

translate for others

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

Hem ispherectomy

See: Rasmussen Syndrome

Hemolytic Anemia

See: Cooley Anemia

Hemolytic-Uremic Syndrome

See: Kidney Disorders

Hemophagocytic

Lymphohistiocytosis

See: Histiocytosis

Hemophagocytic

Reticulosis

See: Histiocytosis

Hemophilia

NATIONAL HEMOPHILIA FOUNDATION

Richard Metz

116 W. 32nd St., 11th Fl.

New York, NY 10001

(212) 328-3700

(212) 328-3777 (FAX)

handi@hemophilia.org

www.hemophilia.org

1,2,5 English, 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 (FAX)

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)

HEREDITARY HEMORRHAGIC TELANGIECTASIA (HHT) FOUNDATION INTERNATIONAL, INC.

Nicole Schaefer

PO Box 329

Monkton, MD 21111

(410) 357-9932

(410) 357-0655 (FAX)

hhtinfo@hht.org

www.hht.org

1.2.3.4.6.7.8 English, some

Spanish

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

colorectalcancer

See: Colon Cancer, Hereditary

Hermansky-Pudlak Syndrome

See also: Albinism and

Hypopigmentation; Visual

Impairments

HERMANSKY-PUDLAK SYNDROME NETWORK INC

Donna Appell

One South Rd.

Oyster Bay, NY 11771-1905

(800) 789-9HPS

(516) 922-4022

(516) 624-0640 (FAX)

info@hpsnetwork.org

www.hpsnetwork.org

1.2.3.6.7.8.9 English, Spanish

Hermaphroditism

See: Genitalia, Ambiguous

Hers Disease

See: Glycogen Storage Diseases;

Muscular Dystrophy

Hirschsprung Disease

See: Intestinal Pseudo-Obstruction

Syndrome

Histiocytosis

See also: Growth Disorders; Liver

Disorders; Lung Diseases;

Pituitary Tumors

HISTIOCYTOSIS ASSOCIATION

Jeffrey M. Toughill

332 North Broadway

Pitman, NJ 08071

(856) 589-6606

(856) 589-6614 (FAX)

info@histio.org

www.histio.org

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

See: AIDS

Hodgkin Disease

See: Leukemia

Holoprosencephaly

See also: Craniofacial Disorders

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 (FAX)

Nancy.Clegg@tsrh.org

www.carterdatabase.org/hpe

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

Spanish

Human Immunodeficiency Virus

See: AIDS

Hunter Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Hurler Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Hurler/Scheie Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Hutchinson-Gilford Syndrome

See: Progeria

Hutchinson-Weber

Peutz Syndrome

See: 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 ext. 14

(301) 202-3811

(301) 202-3813 (FAX)

info@hydroassoc.org

www.hydroassoc.org

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

HYDROCEPHALUS SUPPORT

GROUP, INC

Hydrocephalus Association

Debby Buffa

4340 East West Highway,

Suite 905

Bethesda, MD 20814

(888) 598-3789 ext. 14

(301) 202-3811

(301) 202-3813 (FAX)

info@hydroassoc.org

www.hydroassoc.org

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

NATIONAL HYDROCEPHALUS FOUNDATION

Debbi Fields

12413 Centralia Rd.

Lakewood, CA 90715-1623

(562) 924-6666

(888) 857-3434

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 FOUNDATIONNATIONAL HEADQUARTERS

Marie Fischetti

2640 E 28 St

Brooklyn, NY 11235-2473

(718) 743-9650

(718) 743-9650 (FAX)

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

See also: Autism

AMERICAN HYPERLEXIA ASSOCIATION

Phyllis Kuperman

PO 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

Hyperuricem ia-Choreoathe

tosis-Self-Mutilation

Syndrome

See: Lesch-Nyhan Disease

Hyperuricemia, Hereditary

See: Lesch-Nyhan Disease

Hypodontia and

Nail Dysgenesis

See: Ectodermal Dysplasias

Hypoerythemia, Progressive

See: Anemia, Aplastic

Hypogammaglobulinemia

See: Immune Disorders

Hypomelanosis of Ito

See: Ectodermal Dysplasias;

Epilepsy; Incontinentia Pigmenti;

Vitiligo

Hypomyelination

See: Myelin Disorders

Hypopigmentation

See: Albinism and

Hypopigmentation; Vitiligo

Hypoplasia of the

Corpus Callosum

See: Agenesis of the

Corpus Callosum

Hypoplastic Anemia

See: Anemia, Aplastic

Hypoplastic Left

See: Anemia, Aplastic

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;

Tay-Sachs 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 (FAX)

jpickford@firstskinfoundation.org

www.firstskinfoundation.org

9 Spanish

Idiopathic

Thrombocytopenia Purpura

(ITP)

See: Purpura, Idiopathic

Thrombocytopenia (ITP)

Idiosyncratic Porphyria

See: Porphyria

Ileostomy

See: Ostomy

Illness, Terminal

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

Immune Deficiency

See: Immune Disorders

Immune Disorders

See also: Autoimmune Disorders

IMMUNE DEFICIENCY FOUNDATION

40 W. Chesapeake Ave., Ste. 308

Towson, MD 21204

(800) 296-4433

(410) 321-6647

(410) 321-9165 (FAX)

idf@primaryimmune.org

www.primaryimmune.org

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

Immunologic Diseases

See: Granulomatous Disease,

Chronic

Imperforate Anus

See: Anorectal Malformations

Inclusion Body Myostisis

See: Immune Disorders

Incontinence

SIMON FOUNDATION FOR CONTINENCE

Cheryle Gartley

PO Box 815

Wilmette, IL 60091

(847) 864-3913

(800) 23SIMON

(847) 864-9758 (FAX)

bethlagro@simonfoundation.org

www.simonfoundation.org

1,2,4,6,7 English

NATIONAL ASSOCIATION FOR CONTINENCE

Nancy Muller

PO Box 1019

Charleston, SC 29402 -1019

(843) 377-0900 ext. 207

(800) 252-3337

(843) 377-0905 (FAX)

memberservices@nafc.org

www.nafc.org

1,2,4,6,7 English

Incontinentia Pigmenti

See also: Ectodermal Dysplasias

INCONTINENTIA PIGMENTI INTERNATIONAL FOUNDATION

Susanne Bross Emmerich

30 E 72th St, 16th Fl.

New York, NY 10021

(212) 452-1231

(212) 452-1406 (FAX)

ipif@ipif.org

www.ipif.org/

1,2 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 PseudoObstruction;

Hirschsprung's Disease

ASSOCIATION OF GASTROINTESTINAL MOTILITY DISORDERS, INC. (AGMD)

Mary-Angela DeGrazia-DiTucci

12 Roberts Drive

Bedford, MA 01730

(781) 275-1300

(781) 275-1304 (FAX)

digestive.motility@gmail.com

www.agmd-gimotility.org

1,2,3,4,6 English

INTERNATIONAL HYDRANENCEPHALY SUPPORT GROUP

Lynne Trease

85667 516th Avenue

Clearwater, NE 68726

402-485-2229

rtrease@nntc.net

hydranencephaly.com

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

Intestinal Neuronal Dysplasia

See: Intestinal Pseudo-Obstruction

Syndrome

Intestinal Polyposis

See: Colon Cancer, Hereditary;

Polyposis

Intestinal Polyposis-Cutaneous

Pigmentation Syndrome

See: Colon Cancer, Hereditary;

Polyposis

Intestinal Pseudo-Obstruction

Syndrome

INTERNATIONAL FOUNDATION FOR FUNCTIONAL GI DISORDERS (IFFGD)

PO Box 170864

Milwaukee, WI 53217-8076

(414) 964-1799

(888) 964-2001

(414) 964-7176 (FAX)

iffgd@iffgd.org

www.iffgd.org

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

ASSOCIATION OF GASTROINTESTINAL MOTILITY DISORDERS, INC. (AGMD)

Mary-Angela DeGrazia-DiTucci

AGMD International Corporate

Headquarters

12 Roberts Drive

Bedford, MA 01730

(781) 275-1300

(781) 275-1304 (FAX)

digestive.motility@gmail.com

www.agmd-gimotility.org

1,2,3,4,6 English

Intrahepatic Bile Duct Paucity

See: Alagille Syndrome

Intrauterine Growth

Retardation

See: Growth Disorders

THE MAGIC FOUNDATION

6645 W North Avenue

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808

(708) 383-0899 (FAX)

marianne@magicfoundation.org

www.magicfoundation.org

1,2,3,4,6,7

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

See also: Apnea, Sleep

JOUBERT SYNDROME & RELATED DISORDERS FOUNDATION (JSRDF)

Stephen Mack,

414 Hungerford Dr, Suite 252

Rockville, MD 20850-4193

(614) 864-1362

(614) 864-1362 (FAX)

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

See also: Cerebral Palsy

Parents of Infants and Children

with Kernicterus (PICK)

Mitchell Dvorak

PO Box 10744

White Bear Lake, MN 55110

(312) 274-9695

info@pickonline.org

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

See also: Cystinosis; Kidney

Diseases, Hereditary;

Oxalosis and Hyperoxaluria

AMERICAN ASSOCIATION OF KIDNEY PATIENTS

Gary Green

2701 N. Rocky Point Drive,

Suite 150

Tampa, FL 33607

(800) 749-2257

(813) 636-8122 (FAX)

info@aakp.org

www.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 (FAX)

helpline@kindey.org

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 (FAX)

info@kidney.ca

www.kidney.ca

1,2 French, Chinese, Punjabi

materials

NATIONAL KIDNEY FOUNDATION

Bryan N. Becker,

30 E. 33rd St.

New York, NY 1001

(800) 622-9010

(212) 889-2210

(212) 689-9261

www.kidney.org

1,2,4,5,7,8

PKD FOUNDATION

Dave Switzer

8330 Ward Parkway, Suite 510

Kansas City, MO 64114

(800) PKD-CURE7532873

(816) 931-2600

(816) 931-8655 (FAX)

9www.pkdcure.org

Kidney Stones

See: Cystinuria

Kinky Hair Disease

See: Menkes Disease;

Kinsborne's Syndrome

Kirghizian

Dermatoosteolysis

See: Ectodermal Dysplasias

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

AXYS (FORMERLY KLINEFELTER SYNDROME & ASSOCIATES, INC.-KS&A)

Serving all X and Y chromosome

variations, including 47,XXY,

Trisomy X and 47,X

James Moore

PO BOX 872

Pine, CO 80470-0872

(303) 400-9040

(888) 999-9428

info@genetic.org

www.genetic.org

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

Cantonese, Chinese, Greek,

Hebrew, Mandarin

Klippel-Trenaunay

Syndrome

See Nevi, Giant Congenital;

Sturge-Weber Syndrome

Klippel-Trenaunay

Weber Syndrome

See: Klippel-Trenaunay

Syndrome

Krabbe Disease

See: Leukodystrophy,

Tay-Sachs Disease

Kufs Disease

See: Batten Disease;

Tay-Sachs Disease

Kugelberg-Welander Disease

See: Spinal Muscular Atrophy

Kussmaul-Landry ParaLysis

See: Guillain-Barre Syndrome

Kyphosis

See: Scoliosis

Lactate Dehydrogenase Deficiency

See: Muscular Dystrophy

Lactic Acidosis

See : 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-Barre 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

See also: Attention Deficit

Disorder; Dyslexia

ALLEN INSTITUTE

Peter Love

85 Jones St.

PO Box 100

Amston, CT 06248

(860) 228-6962

giving@alleninstitute.org

2

BENETECH/BOOKSHARE

480 S. California Avenue,

Suite 201

Palo Alto, CA 94306-1609

(650) 644-3400

(650) 475-1066 (FAX)

info@benetech.org

www.benetech.org

LEARNING DISABILITIES ASSOCIATION OF AMERICA

Mary-Clare Reynolds

4156 Library Rd.

Pittsburgh, PA 15234-1349

(412) 341-1515

(412) 344-0224 (FAX)

info@ldaamerica.org

www.ldaamerica.org

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

LEARNING DISABILTIES ASSOCIATION OF NEW BRUNSWICK

Provincial Office

203-403 Rue Regent

St. Fredericton, NB E3B 3X6

(506) 459-7852

(877) 544-7852

(506) 455-9300 (FAX)

ldanb@nald.ca

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 (FAX)

info@ldanyc.org

www.ldanyc.org

4 English, Spanish

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 (FAX)

ncld@ncld.org

www.ld.org/www.GetReadytoRea

d.org/www.RTINetwork.org/www

.LDNavigator.ncld.org

1,2 Learning disabilities, blind,

low vision, physical disabilities

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 (FAX)

suzanne.panteluk@norquest.ca

www.norquest.ab.ca

English

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

School of Medicine, Psychiatry

Lowell Anderson

1 Washington Square Village

Apt 14-A

New York, NY 10012

212-420-0622

lta1@nyu.edu

www.lndinfo.org

1,2,3 English

Letterer-Siwe Disease

See: Histiocytosis

Leukemia

LEUKEMIA & LYMPHOMA SOCIETY

1311 Mamaroneck Ave,

Suite 310

White Plains, NY 10605

(914) 821-8955

(914) 821-3755

infocenter@lls.org

www.lls.org

1.2.3.4.5.6.7.8 French and

Spanish materials

Leukodystrophy

UNITED LEUKODYSTROPHY FOUNDATION

Kirsten Kotlarchik

224 N. 2nd St, Suite 2,

DeKalb, IL 60115

(815) 748-3211

(815) 751-7071

(815) 748-0844 (FAX)

office@ulf.org

www.ulf.org

1.2.3.4.6.7.8.9 English, limited

Spanish and French materials

Leukodystrophy,

Metachromatic

See: Leukodystrophy,

Tay-Sachs Disease

Limit Dextrinosis

See: Glycogen Storage Diseases;

Muscular Dystrophy

Lipid Histiocytosis

See: Niemann-Pick Disease

Lipidosis, Cerebroside

See: Gaucher Disease

Lipofuscinoses, Neuronal

Ceroid

See: Batten Disease

Lipoid Hyperplasia,

Congenital

See: Adrenal Disorders

Lipomyelomeningocele

LIPOMYELOMENINGOCELE FAMILY SUPPORT NETWORK

321 Hopewell Street

Birdsboro, PA 19508

(610) 582-5937

gmcafee@ptd.net

www.home.ptd.net/~ifsn

Lissencephaly

See also: Epilepsy

LISSENCEPHALY NETWORK, INC.

Dianna Fitzgerald

10408 Bitterroot Ct.

Fort Wayne, IN 46804-6931

(219) 432-4310

(219) 432-4310 (FAX)

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

German, Greek

Liver Disorders

AMERICAN LIVER FOUNDATION

Karla Roman

39 Broadway, Suite 2700

New York, NY 10006

(800) 223-0179

(212) 668-1000

(212) 483-8179 (FAX)

info@liverfoundation.org

www.liverfoundation.org

2, 4, 5, 6, 7, 8 English; some

material in Spanish, Chinese,

Korean

CANADIAN LIVER FOUNDATION

Suite 801, 3100 Steeles Ave. East

Markham, ON L3R 8T3

(800) 563-5483

(416) 491-3353

(905) 752-1540 FAX)

clf@liver.ca

www.liver.ca/Home.aspx

2,5,8 English, French materials

Liver Phosphorylase Deficiency

See: Glycogen Storage Diseases;

Muscular Dystrophy

Lobstein Disease, Type I

See: Osteogenesis Imperfectay

Long Q-T Syndrome

SUDDEN ARRHYTHMIA DEATH SYNDROMES (SADS) FOUNDATION

Alice Lara

508 E. South Temple, Suite 202

Salt Lake City, UT 84102

(800) STO-PSAD

sads@sads.org

www.sads.org

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

materials

Lordosis

See: Scoliosis

Lowe-Bickel Syndrome

See: Lowe Syndrome

Lowe Syndrome

LOWE SYNDROME ASSOCIATION

Deborah Jacobs

PO Box 864346

Plano, TX 75086-4346

(972) 733-1338

info@lowesyndrome.org

www.lowesyndrome.org

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

Lowe-Terry-Machlachlan Syndrome

See: Lowe Syndrome

Lung Diseases

AMERICAN LUNG ASSOCIATION

Chrystal V. Headen

1301 Pennsylvania Ave. NW,

Suite 800

Washington, DC 20004

(202) 785-3355

(202) 452-1805 (FAX)

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

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

2000 L Street NW, Suite 410

Washington, DC 20036

(202) 349-1159

(800) 558-0121

(202) 349-1156 (FAX)

lupusinfo@lupus.org

www.lupus.org

1,2,4,5,7,8.9 English, some

Spanish materials

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

Lymphedema

NATIONAL LIYMPHEDEMA NETWORK

Saskia R.J. Thiadens, R.N.

116 New Montgomery Street,

Suite 235

San Francisco, CA 94105

(800) 541-3259

(415) 908-3681

(415) 908-3813 (FAX)

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 Fl.

New York, NY 10065

(212) 605-3719

(212) 605-3795 (FAX)

foundation@retinal-research.org

www.macula.org

1,2,4,6,7 English

MACULAR DEGENERATION FOUNDATION

Liz Trauernicht

PO Box 531313

Henderson, NV 89053

(888) 633-3937

(702) 450-2908

(702) 450-3396 (FAX)

liz@eyesight.org

www.eyesight.org

1,2,7,8,9 English

Macular Dystrophies,

Juvenile

See: Macular Diseases

Maffucci Syndrome

See: Cancer; Ollier Disease

Malignant Hyperthermia

MALIGNANT HYPERTHERMIA ASSOCIATION OF THE UNITED STATES

POB 1069

Sherburne, NY 13460

(607) 674-7901

(607) 674-7910 (FAX)

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

See also: Metabolic Disorders

MAPLE SYRUP URINE DISEASE FAMILY SUPPORT GROUP

Sandy Bulcher

9517 Big Bear Ave

Powell, OH 43065

(614) 389-2739

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

See also: Connective Tissue

Disorders; Heart Disorders;

Scoliosis

CANADIAN MARFAN ASSOCIATION

Eva Theofilopoulos

Central Plaza PO 128 Queen St.

S. PO Box 42257

Mississauga, ON L5M 4Z0

(905) 826-3223

(866) 722-1722

(905) 826-2125

info@marfan.ca

www.marfan.ca

1.2.4.6.8.9 English, French

NATIONAL MARFAN FOUNDATION

Jennifer Buffone, LCSW

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

Marteaux-lamy syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Marshall Syndrome, Type I

See: Ectodermal Dysplasia

Martin-Bell Syndrome

See: Fragile X Syndrome

Mast Cell Disease

THE MASTOCYTOSIS SOCIETY, INC.

PO Box 129

Hastings, NE 68902-0129

info@tmsforacure.org

www.tmsforacure.org

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

Mediterranean Anemia

See: Cooley Anemia

Medium-Chain Acyl-Coa

Dehydrogenase Deficiency (MCAD)

See: Fatty Oxidation Disorders

Medulloblastoma, Hereditary

See: Brain Tumors

Meerkeren-Ehlers-Danlos Syndrome

See: Ehlers-Danlos Syndrome

Meige Disease

See: Lymphedema

Melanoleucoderma Ectodermal Dysplasias

See: Colon Cancer, Hereditary;

Polyposis

Melas Syndrome

See: Growth Disorders; Lactic

Acidosis; Mitochondrial

Disorders

Melnick Needles Syndrome

See: Growth Disorders

Men Syndrome I

See: Multiple Endocrine

Neoplasia I

Meniere's Syndrome

See: Balance Disorders and

Dizziness

Meningeal Capillary Angiomatosis

See: Sturge-Weber Syndrome

Meningococcal Disease

THE NATIONAL MENINGITIS ASSOCIATION, INC. (NMA)

PO Box 725165

Atlanta, GA 31139

(866) 366-3662

(866) FON-ENMA

(877) 703-6096 (FAX)

Menkes Disease

See Liver Disorders; Metabolic

Disorders

Mental Illness

See also: Intellectual

Disability/Mental Illness

ARIZONA REHABILITATION SERVICES ADMINSTRATION

Denise Olsen

1789 W. Jefferson, 2NW

Phoenix, AZ 85007

(602) 542-3332

(800) 563-1221

(602) 542-3778 (FAX)

www.de.state.az.us/rsa/

CANADIAN MENTAL HEALTH ASSOCIATION-NATIONAL OFFICE

Phenix Professional Building

595 Montreal Road, Suite 303

Ottawa, ON K1K 4L2

(613) 745-7750

(613) 745-5522 (FAX)

www.cmha.ca

2,4,7

CHILDREN'S HOSPICE INTERNATIONAL

Ann Armstrong-Dailey

500 Montgomery Street, Suite 400

Alexandria, VA 22314

(800) 2-4-CHILD (242-4453)

(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 (FAX)

richlabelle@fndusa.org

fndfl.org

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

Kreole

FEDERATION OF FAMILIES FOR CHILDREN'S MENTAL HEALTH

Sandra Spencer

9605 Medical Center Drive,

Suite 280

Rockvillie, MD 20850

(201) 403-1901

(201) 403-1909 (FAX)

fcmh@ffcmh.org

www.ffcmh.org

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

material

FEDERATION OF FAMILIES OF VIRGINIA

Vicki Hardy-Murrell

8660 Staples Mill Road

Richmond, VA 23228

(804) 330-5030

(877) 264-8366

(804) 264-8426 (FAX)

1,2 English, Italian, Greek, Asian

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 (FAX)

www.friendshealthconnection.org

MENTAL HEALTH AMERICA

Anisha Imhoff-Kerr

2000 N. Beauregard St., 6th Fl.

Alexandria, VA 22311

(703) 684-7722

(800) 969-6642

(703) 684-5968 (FAX)

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., Ste. 610

Denver, CO 80222

(720) 208-2220

(800) 456-3249

(720) 208-2250 (FAX)

mentalhealth@mhacolorado.org

www.mhacolorado.org

4 English, Spanish

NATIONAL ALLIANCE ON MENTAL ILLNESS (NAMI)

Lynn Borton

3803 N. Fairfax Dr., Ste. 100

Arlington, VA 22203

(703) 516-7979

(800) 950-6264HelpLine

HelpLine 10am-5pm, M-F

info@nami.org

www.nami.org

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

ST. MARY'S HEALTHCARE SYSTEM FOR CHILDREN

Rhonda Broden

29-01 216th Street

Bayside, NY 11360

(800) 270-2478

(888) KID-SNYS

(718) 423-6001 (FAX)

info@stmaryskids.org

www.stmaryskids.org

Translation services available

THE GEORGE WASHINGTON UNIVERSITY

Graduate School of Education

and Human Development

The HEATH Resource Center at

the National Youth Transitions

Center

Dr. Juliana Taymans

2134 G Street, N.W.I

Washington, DC 20052-0001

(202) 973-0904

(202) 973-0908 (FAX)

askheath@gwu.edu

www.heath.gwu.edu

1,2 English

WYOMING DEPARTMENT OF WORKFORCE SERVICES

John Basse

122 W. 25th St.

Herschler Building, 2E

Cheyenne, WY 82001

(307) 777-8650

(307) 777-5857 (FAX)

www.wyomingworkforce.org

2 English

Mental Retardation

See: Autism; Intellectual/

Developmental Disabilities

(AAIDD) AMERICAN ASSOCIATION ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES

Margaret A. Nygren

Doreen Croser

501 3rd Street, NW Suite 200

Washington, DC 20001

(800) 424-3688 ext. 204

(202) 387-1968

(202) 387-2193 (FAX)

mnygren@aaidd.org

dcroser@aaidd.org

www.aaidd.org

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

French

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 (FAX)

info@thenadd.org

www.thenadd.org

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

informational and regional

conferences

NATIONAL DEVELOPMENTAL DISABILITIES NURSES ASSOCIATION (DDNA)

Mary Alice Willis

PO Box 536489

Orlando, FL 32853-6489

(800) 888-6733

(407) 835-0642

(407) 426-7440 (FAX)

contact@ddna.org

www.ddna.org

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

PROFESSIONAL EDUCATION AND RESPITE SERVICE INC

Jesse Kurshner

500 West Jubal Early Drive,

Suite 210

Winchester, VA 22601

(540) 431-5641

(540) 431 5628 (FAX)

misterk@thePERS.com

www.thePERS.com

1,2,3 English

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 (FAX)

info@thearc.org

www.thearc.org/

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

materials

VIRGINIA DEPARTMENT OF REHABILITATIVE SERVICES

James A. Rothrock

8004 Franklin Farms Drive

Richmond, VA 23229

(804) 662-7000

(800) 552-5019

(804) 662-9532 (FAX)

www.vadrs.org

2,3,4

VOR (FORMERLY VOICE OF THE RETARDED)

Tamie Hopp

836 S. Arlington Heights Rd, #351

Elk Grove Village, IL 60007

(605) 399-1624

(877) 399-4VOR

(605) 399-1631 (FAX)

thopp@vor.net

www.vor.net

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

Metabolic Disorders

CLIMB

Pam Davies

Climb Building, 176 Nantwich

Road, Crewe,

Cheshire, UK CW2 6BG

(084) 524-12172

(084) 524-12173

(084) 524-12174 (FAX)

pam@climb.org.uk

www.climb.org.uk

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

THE WORLD LIFE FOUNDATION

PO Box 571

Bedford, TX 76095

(800) 289-5433

(800) 289-5433

(817) 285-0216 (FAX) English,

Spanish

MERRF Syndrome

See: Myoclonus; Mitochondrial

Disorders

Metachromatic

Leukodystrophy

See: Leukodystrophy;

Tay-Sachs Disease

Metaphyseal Dysostosis,

Type B IV

See: Shwachman Syndrome

Methylmalonic Acidemia

See: Acidemia, Organic

Microcephaly

MARCH OF DIMES BIRTH DEFECTS FOUNDATION

1275 Mamaroneck Avenue

White Plains, NY 10605

(914) 997-4488

(888) 663-4637

(914) 997-4763 (FAX)

askus@marchofdimes.com

www.marchofdimes.com/www.ne

wsmomsneed.marchofdimes.co

m/www.nacersano.org/www.blog

.nacersano.org

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

Microphthalmia

See: Anophthalmia;

Visual Impairments

Microsomia, Hemifacial

See: Craniofacial Disorders;

Goldenhar Syndrome

Microtia

See: Craniofacial Disorders

Migraines

See: Hemiplegia, Alternating

Mikaelian Syndrome

See: Ectodermal Dysplasias

Miller Syndrome

See: Nager and Miller

Syndromes

Miller-Dieker Syndrome

See: Lissencephaly

Miller-Fischer Syndrome

See: Guillain-Barre 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

(188) 831-7UMDF

(412) 793-6477 (FAX)

info@umdf.org

www.umdf.org

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

Mitochondrial Myopathy

See: Mitochondrial Disorders;

Muscular Dystrophy,

Dejerine-Landouzy

Moebius Syndrome

THE MOEBIUS SYNDROME FOUNDATION

Vicki McCarrell

PO Box 147

Pilot Grove, MO 65276

(660) 834-3406

vicki@moebiussyndrome.com

www.moebiussyndrome.com

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

Monosomy X

See: Turner Syndrome

Morquio Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Morvan Disease

See: Syringomyelia

Motor-Sensory

Neuropathy, Hereditary

See: Charcot-Marie-Tooth

Disease

Moyamoya Disease

See: Stroke; Vascular

Malformations

Mucolipidoses

See: Mucopolysaccharidosis;

Mucolipidosis Type IV;

Tay-Sachs Disease

Mucolipidosis Type IV

See: Mucopolysaccharidosis;

Tay-Sachs Disease; Visual

Impairments

ML4 FOUNDATION

Dr. Rebecca Oberman

3500 Piedmont Road, Suite 500

Atlanta, GA 30305

(877) ML4-5459 (654-5459)

(718) 859-7371

info@ml4.org

www.ml4.org

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

Mucopolysaccharidoses

NATIONAL MPS SOCIETY

Laurie J. Turner

PO Box 14686

Durham, NC 27709-4686

(919) 806-0101

(877) MPS-1001

(919) 806-2055 (FAX)

info@mpssociety.org

www.mpssociety.org

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

Spanish material

Mucopolysaccharidosis

Little People of America

Joanna Campbell

250 El Camino Real, Suite 201

Tustin, CA 92780

(714) 368-3689

(888) LPA-2001

(714) 368-3367 (FAX)

info@lpaonline.org

www.lpaonline.org/

1,2,3,4,5,6.7 English, Spanish

materials

Mucosulfatidosis

See: Hearing Impairments;

Ichthyosis; Leukodystrophy;

Tay-Sachs 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

See also: Spinal Cord Injuries

MULTIPLE SCLEROSIS SOCIETY-THUNDER BAY CHAPTER

102 79 N. Court St.

Thunder Bay, ON P7A 4T7

(807) 344-2944

(807) 346-5923 (FAX) English,

French, Finnish material

MULTIPLE SCLEROSIS SOCIETY OF CANADA

175 Bloor Street East, Suite 700,

North Tower

Toronto, ON M4W 3R8

(416) 922-6065

(416) 922-7538 (FAX)

info@mssociety.ca

www.mssociety.ca

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

NATIONAL MULTIPLE SCLEROSIS SOCIETY

Collen McGuire

1650 South Avenue, Suite 100

Rochester, NY 14620-3901

(800) 344-4867

(585) 442-2817 (FAX)

nyrevents@nmss.org

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

materials

Multiple Sulfatase Deficiency

See: Hearing Impairments;

Ichthyosis; Leukodystrophy;

Tay-Sachs Disease

Muscle Phosphofructokinase Deficiency

See: Glycogen Storage Diseases;

Muscular Dystrophy

Muscle Phosphorylase Deficiency

See: Glycogen Storage Diseases;

Muscular Dystrophy

Muscular Atrophy, Peroneal

See: Charcot-Marie-Tooth

Disease

Muscular Disorders

See: Freeman-Sheldon

Syndrome

Muscular Dystrophy

MUSCULAR DYSTROPHY ASSOCIATION

Bob Mackle

3300 East Sunrise Drive

Tucson, AZ 85718

(520) 529-2000

(800) 572-1717

(520) 529-5300 (FAX)

mda@mdausa.org

www.mda.org

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

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

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

2,4 English

PARENT PROJECT MUSCULAR DYSTROPHY

Ryan Fischer

401 Hackensack Avenue, 9th Fl.

Hackensack, NJ 07601

(201) 250-8440

(800) 714-5437

(201) 944-9987 (FAX)

pat@parentprojectmd.org

www.parentdmd.org

1,2,3 English, French

Myasthenia Gravis

MYASTHENIA GRAVIS FOUNDATION OF AMERICA, INC

Tor Holtan

355 Lexington Avenue, 15th Fl.

New York, NY 10017

(800) 541-5454

(212) 297-2156

(212) 370-9047 (FAX)

THoltan@myasthenia.org

www.myasthenia.org

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

Myelin Disorders

See also: Leukodystrophy

THE CANADIAN MYELIN RESEARCH INITIATIVE

Wayne Simmons

4330 Spinningdale Ct.

Mississauga, ON L5M 3J8

(905) 567-5183

(905) 567-9189 (FAX)

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

See also: Cancer; Leukemia

INTERNATIONAL MYELOMA FOUNDATION

Kelly Cox

12650 Riverside Dr, Suite 206

N. Hollywood, CA 91607-3421

(800) 452-2873

(818) 487-7455

(818) 487-7454 (FAX)

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

Southern Illinois University

School of Medicine

Elizabeth D. Tate

PO Box 19643

Springfield, IL 62794-9643

(217) 545-7635

(217) 545-1903 (FAX)

omsusa@siumed.edu

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,

X-Linked

Myopathy, Centronuclear

See: Myotubular Myopathy, X-Linked;

Muscular Dystrophy

Myopathy, Hyperthyroid

See: Muscular Dystrophy;

Thyroid Disorders

Myophosphorylase Deficiency

See: Glycogen Storage Diseases

Myositis, Autoimmune Disorders

Myositis Ossificans

See: Fibrodysplasis Ossificans

Progressiva

Myotonia, Congenita

See: Muscular Dystrophy

Myotubular Myopathy, X-Linked

Myotubular Myopathy, X-Linked

MYOTUBULAR MYOPATHY RESOURCE GROUP

Pamela Scoggin

2602 Quaker Dr.

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-Franceschetti-Jadassohn Syndrome

See: Incontinentia

PigmentiNager and Miller

Syndromes

See also: Craniofacial Disorders;

Hearing Impairments; Limb

Disorders

THE FOUNDATION FOR NAGER AND MILLER SYNDROMES (FNMS)

Dede Van Quill

13210 SE 342nd Street

Auburn, WA 98092

(800) 507-3667

(253) 333-1483

(253) 288-7679 (FAX)

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 (FAX)

info@NBIAdisorders.org

www.NBIAdisorders.org

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

Neurofibromatosis

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 (FAX)

kmills@ctf.org

www.CTF.org

2,9

NEUROFIBROMATOSIS, INC.

Kim Bischoff

213 S. Wheaton St.

Wheaton, IL 60187

(630) 510-1115

(800) 942-6825

(630) 627-1117 (FAX)

admin@nfnetwork.org

www.nfnetwork.org

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

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 English

CHILDREN'S NEUROBIOLOGICAL SOLUTIONS

Alex Richmond

1223 Wilshire Blvd, #937,

Santa Monica, CA 90403

(310) 889-8611

(805) 963-6633 (FAX)

info@cnsfoundation.org

www.cnsfoundation.org

1,5,7,8

THE COLLEEN GIBLIN FOUNDATION

Meg Minassian

700D Lake Street

Ramsey, NJ 07446

(201) 962-8686

(201) 962-8688 (FAX)

cgf01@aol.com

http;//www.colleengiblinfound.org

8,9

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

George Capone, MD

707 N. Broadway

Baltimore, MD 21205

(888) 554-2080

(443) 923-9400

(443) 923-9400 (FAX)

intake@kennedykrieger.org

www.kennedykrieger.org

MUSCULAR DYSTROPHY CANADA

Margaret Otter

2345 Yonge St, Suite 901

Toronto, ON M4P 2E5

(416) 488.2699

(800) 567-2873

(416) 488.0107 (FAX)

info@muscle.ca

www.muscle.ca

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

Neurometabolic Disorders

See: Metabolic Disorders

Neuronal Ceroid

Lipofuscinoses

See: Batten Disease

Neuropathy, Auditory

See: Kernicterus

Neuropathy, Hereditary,

Sensory Motor

See: Charcot-Marie-Tooth

Disease

Neuropathy, Peripheral

See: Charcot-Marie-Tooth Disease

Neurotransmitter Diseases,

Pediatric

PEDIATRIC NEUROTRANSMITTER DISEASE ASSOCIATION

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

Nevi, Giant Congenital

See : Craniofacial Disorders;

Ichthyosis; Klippel-Trenaunay

Syndrome; Sturge-Weber

Syndrome

Neville Disease

See: Niemann-Pick Disease

Nevo Syndrome

See: Sotos Syndrome

NIemann-Pick Disease

See also: Ataxia; Metabolic

Disorders; Tay-Sachs Disease

ARA PARSEGHIAN MEDICAL RESEARCH FOUNDATION

Peg Romano

4729 E Sunrise Dr, #327

Tucson, AZ 85718-3327

(520) 577-5106

(520) 577-5212 (FAX)

promano@parseghian.org

www.parseghian.org

English

NATIONAL NIEMANN-PICK DISEASE FOUNDATION (NNPDF)

Nadine M. Hill

PO Box 49; 401 Madison Ave,

Suite B

Fort Atkinson, WI 53538

(920) 563-0930

(877) 287-3672

(920) 563-0931 (FAX)

nnpdf@nnpdf.org

www.nnpdf.org

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

Nonketotic Hyperglycinemia

See: Acidemia, Organic

Noonan Syndrome

See also: Growth Disorders;

Heart Disorders; Malignant

Hyperthermia; Williams

Syndrome

THE NOONAN SYNDROME SUPPORT GROUP, INC. (TNSSG)

Wanda Robinson

PO Box 145

Upperco, MD 21155

(888) 686-2224

(410) 374-5245 (FAX)

info@noonansyndrome.org

www.noonansyndrome.org

1,2,3,6,8,9

Norman-Roberts Syndrome

See: Lissencephaly

Nyhan Syndrome

See: Lesch-Nyhan Syndrome

OAV Syndrome

See: Goldenhar Syndrome

Obsessive-Compulsive

Disorder

INTERNATIONAL OCD FOUNDATION

Alex Bahrawy

PO Box 961029

Boston, MA 02196

(617) 973-5801

(617) 973-5803 (FAX)

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

Odontoonychohypohidrotic Dysplasia

See: Ectodermal Dysplasias

Odontotrichodysplasia with Neutropenia '

See: Ectodermal Dysplasias;

Neutropenia

Odontotrichomelic Syndrome

See: Ectodermal Dysplasias

Oldfield Syndrome

See: Colon Cancer, Hereditary; Polyposis

OligophreniaMicrophthalmos

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

OPSOCLON US-MYOCLON US SUPPORT NETWORK

Connie Quinn

725 North St

Jim Thorpe, PA 18229

(626) 919-2448

sandragreenberg@ hotmail.com

3

Optic Nerve Hypoplasia

See: Septo-Optic Dysplasia

Orbital Hypertelorism

See: Craniofacial Disorders

Organic Acidemia

See: Acidemia, Organic

Ornithine Transcarbamylase (OTC) Deficiency

See: Urea Cycle Disorders

Orofaciodigital Syndrome, Type I

See: Ectodermal Dysplasias

Osler-Weber-Rendu Syndrome

See: Hemorrhagic Telangiectasis,

Hereditary

Osteitis Fibrosa Disseminata

See: McCune-Albright Syndrome

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 (FAX)

bonelink@oif.org

www.oif.org

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

Ostomy

UNITED OSTOMY ASSOCIATION, INC.

Dave Rudzin

PO Box 512

Northfield, MN 55057-0512

(800) 826-0826

(949) 660-9262 (FAX)

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

UNITED OSTOMY ASSOCIATION OF CANADA, INC.

344 Bloor St. West, Suite 501

Toronto, ON M5S 3A7

(416) 595-5452

(888) 969-9698

(416) 595-9924 (FAX)

info1@ostomycanada.ca

www.ostomycanada.ca

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

Oxalosis & Hyperoxaluria

THE OXALOSIS AND HYPEROXALURIA FOUNDATION

Kim Hollander

201 E. 19th Street, Suite 12E

New York, NY 10003

(212) 777-0470

(800) OHF-8699

(212) 777-0471 (FAX)

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 Syndrome

See also: Epilepsy

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

See also: Spinal Cord

MAKING HEADWAY FOUNDATION, INC.

Catherine Lepone, Executive

Director

115 King St.

Chappaqua, NY 10514-3460

(914) 238-8384

(914) 238-1693 (FAX)

info@makingheadway.org

www.makingheadway.org

4,8 English

Pediatric Cancer

THE CHILDREN'S ONCOLOGY GROUP (COG)

Cheryl Fleming

440 E. Huntington Drive, Ste.

400

Arcadia, CA 91006-3776

(626) 447-1674

(301) 718-0047 (FAX)

westcoast@curesearch.org

www.curesearch.org/

6

Pelizaeus-Merzbacher Disease

See also: Leukodystrophy

THE PMD FOUNDATION

Jeff Leonard

1307 White Horse Road, Ste. 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, Ste. 116

Seattle, WA 98115

(206) 525-8140

(800) 723-9166

(206) 525-5023 (FAX)

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

2814 Camino Dos Rios Suite 402

Newbury Park, CA 91302

(805) 499-9973

(805) 480-0633 (FAX)

www.pituitary.org

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

Pityriasis Rubra Pilaris

See: Ichthyosis

Polio & Ventilator Users

POST-POLIO HEALTH INTERNATIONAL

Joan L. Headley

4207 Lindell Blvd, No 110

Saint Louis, MO 63108-2930

(314) 534-0475

(314) 534-5070 (FAX)

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-Barre Syndrome

Polyneuropathy, Chronic Relapsing

See: Guillain-Barre Syndrome

Polyostotic Fibrous Dysplasia

See: McCune-Albright Syndrome

Polyposis

See: Cancer; Colon Cancer,

Hereditary

Polyradiculoneuropathy

See: Guillain-Barre Syndrome

Pompe Disease

(AMDA) ACID MALTASE DEFICIENCY ASSOCIATION

Tiffany House

PO Box 700248

San Antonio, TX 78270-0248

(210) 494-6144

(210) 497-3810

(210) 490-7161 (FAX)

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

PO Box 22712

Houston, TX 77056-1837

(713) 266-9617

(866) APF-3635

(713) 840-9552 (FAX)

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 (FAX)

1,2,3,4 English, French

Port Wine Stains

See: Sturge-Weber Syndrome

Post-Polio

See: Polio

Postaxial Acrofacial Dysostosis

See: Nager & Miller Syndromes

Prader-Willi Syndrome

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 (FAX)

webmaster1@pwsausa.org

www.pwsausa.org

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

Spanish, French

NTARIO PRADER-WILLI SYNDROME ASSOCIATION

Nita Goldband

POB 73514

Toronto, ON M6C 4A7

(416) 481-8657

(416) 981-7788 (FAX)

opwsa@rogers.com

www.opwsa.com

1,2 English, French

Prematurity, Birth Defects

See: Disabilities, General

MARCH OF DIMES FOUNDATION

1275 Mamaroneck Avenue

White Plains, NY 10605

(914) 997-4488

(888) 663-4637

(914) 997-4763 (FAX)

askus@marchofdimes.com

www.marchofdimes.com

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

Pseudo-Hurler Polydystrophy

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Pseudocholinesterase Deficiency

See: Malignant Hyperthermia

Pseudoxanthoma Elasticum (PXE)

See also: Connective Tissue

Disorders; Heart Disorders;

Macular Diseases; Visual

Impairments

NATIONAL ASSOCIATION FOR PSEUDOXANTHOMA ELASTICUM

8760 Manchester Road

St. Louis, MO 63144-2724

(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

(503) 244-7404 ext. 367

(800) 723-9166

(503) 245-0626 (FAX)

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

Acidosis

Pyruvate Dehydrogenase Phosphatase

See: Lactic Acidosis

Q-T Prolongation

See: Long Q-T Syndrome

Rapp-Hodgkins Syndrome

See also: Cleft Palate;

Craniofacial Disorders; Deaf-Blind;

Ectodermal Dysplasias;

Hearing Impairments; Visual

Impairments

Rare Disorders

See: Genetic Disorders

NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)

Mary Dunkle

55 Kenosia Avenue

Danbury, CT 06813-1968

(800) 999-6673

(203) 744-0100

(203) 798-2291 (FAX)

orphan@rarediseases.org

www.rarediseases.org

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

Rasmussen Encephalitis

See: Rasmussen Syndrome

Rasmussen Syndrome

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

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 (FAX)

info@rsds.org

www.rsds.org

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

Recklinghausen Disease

See: Neurofibromatosis

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

(609) 530-1443

(609) 530-1912 (FAX)

bills@rrpf.org

www.rrpf.org

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

Retinitis Pigmentosa

FOUNDATION FIGHTING BLINDNESS

Sharon Cole

890 Yonge Street, 12th Fl.

Toronto, ON M4N 3P4

(800) 461-3331

(416) 360-4200

(416) 360-0060 (FAX)

info@ffb.ca

www.ffb.ca

1.2.3.5.7.8 English, French

materials

FOUNDATION FIGHTING BLINDNESS

Mitsy Palmer

7168 Columbia Gateway Drive,

Suite 100

Columbia, MD 21046

(800) 683-5555

(800) 683-5551 (FAX)

info@FightBlindness.org

www.FightBlindness.org

1.2.5.6.8.9 English only

RETINITIS PIGMENTOSA INTERNATIONAL

Helen Harris

PO Box 900

Woodland Hills, CA 91365

(800) 344-4877

(818) 992-0500

(818) 992-3265 (FAX)

info@rpinternational.org

www.rpinternational.org

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

materials

Retinoblastoma

See also: Cancer; Visual

Impairments

ASSOCIATION FOR PARENTS OF WITH VISION IMPAIRMENTS

Susan LaVenture

1 North Lexington Ave., 8th Fl.

White Plains, NY 10601

(800) 562-6265

(617) 972-7441

(617) 972-7444 (FAX)

napvi@guildhealth.org

www.Napvi.org

1,2 English, Spainish

Retinocerebral

Angiomatosis

See: Von Hippel-Lindau

Syndrome

Rett Syndrome

THE INTERNATIONAL RETT SYNDROME FOUNDATION

Lisa Hayden

4600 Devitt Drive

Cincinnati, OH 45246

(513) 874-3020

(800) 818-7388

(513) 874-2520 (FAX)

lhayden@rettsyndrome.org

www.rettsyndrome.org

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

RETT SYNDROME RESEARCH FOUNDATION

Monica Coenraads

4600 Devitt Drive

Cincinnati, OH 45246

(800) 818-RETT

(513) 874-3020

(513) 874-2520 (FAX)

mgriffin@rsrf.org

1,2,3,8 English

Reye Syndrome

See: Fatty Oxidation Disorder

Riley-Day Syndrome

See: Familial Dysautonomia

Rheumatic Diseases,

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 (FAX)

robinowfoundation@comcast.net

www.Robinow.org

2,3,6,9 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

See also: Craniofacial Disorders;

Heart Disorders

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

Russell-Silver Syndrome

See also: Growth Disorders;

Short Stature

Saethre-Chotzen Syndrome

See: Craniofacial Disorders

Salamon Syndrome

See: Ectodermal Dysplasias

Sandhoff Disease

See: Tay-Sachs Disease

Sanfilippo Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Scheie Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Schinzel-Giedion Syndrome

See: Apnea, Sleep; Deaf-Blind;

Ectodermal Dysplasias; Epilepsy;

Growth Disorders; Hearing

Impairments; Visual Impairment

SCid

See: Immune Disorders

Scleroderma

See also: Arthritis; Autoimmune

Disorders

SCLERODERMA FOUNDATION, INC.

300 Rosewood Drive, Suite 105

Danvers, MA 01923

(800) 722-HOPE ext. 40

(978) 463-5843

(978) 463-5809 (FAX)

sfinfo@scleroderma.org

www.scleroderma.org

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

SCLERODERMA RESEARCH FOUNDATION

Emanuel Coronis

220 Montgonmery St., Suite 1411

San Francisco, CA 94104

(800) 441-CURE2873

(415) 834-9444

(415) 834-9177 (FAX)

info@sclerodermaresearch.org

www.srfcure.org

1,2,4

Scoliosis

NATIONAL SCOLIOSIS FOUNDATION

5 Cabot Pl

Stoughton, MA 02072

(781)341-6333

(800) 673-6922

(781) 341-8333 (FAX)

nsf@scoliosis.org

www.scoliosis.org

1,2 English, some Spanish

Seckel Syndrome

See: Craniofacial Disorders;

Growth Disorders

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(FAX)

Jacqui.Moskowitz@fscnj.org

www.fscnj.org

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

Spanish and 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

Septo-Optic Dysplasia

See also: Pituitary Tumors; Visual

Impairments

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

THE MAGIC FOUNDATION

Marianne Wiedeman

6645 W. North Avenue

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808

(708) 383-0899 (FAX)

marianne@magicfoundation.org

www.magicfoundation.org

1,2,3,4,6,7

Shprintzen Syndrome

See: Velo-Cardio-Facial

Syndrome

Shwachman Syndrome

See also: Growth Disorders

Shwachman-Diamond

Syndrome

See: Shwachman Syndrome

Shy-Drager/Multiple

System Atrophies

See: Dysautonomia

Sialidosis

See: Mucopolysaccharidosis;

Tay-Sachs 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 (FAX)

www.piedmonthealthservices.org

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

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 (FAX)

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

Silver-Russell Syndrome

See: Russell-Silver Syndrome

Simpson-Golabi-Behmel Syndrome

See: Beckwith-Wiedermann

Syndrome

Skeletal Anomalies

See: Ectodermal Dysplasias

Skeletal Dysplasia

See: Dwarfism; Growth

Disorders; Short Stature

Sleep Apnea

See: Apnea, Sleep

SLD

See: Dyslexia

SLO Syndrome

See: Smith-Lemli-Opitz

Syndrome

Sly Syndrome

See: Mucopolysaccharidosis;

Tay-Sachs Disease

Smith-Lemli-Opitz Syndrome

See: Craniofacial 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 (FAX)

info@prisms.org

www.prisms.org

1,2,3,6,8,9

Sotos Syndrome

SOTOS SYNDROME SUPPORT ASSOCIATION

PO Box 4626

Wheaton, IL 60189

(888) 246-SSSA7772

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

See: Apraxia; Stuttering

CENTER FOR SPEECH AND LANGUAGE DISORDERS

310-D S. Main Street

Lombard, IL 60148

(630) 652-0200

(630) 652-0200 (FAX)

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

PO Box 17427

Arlington, VA 22216

(800) 621-3141

(202) 944-3285

(202) 944-3295 (FAX)

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 (NSCIA)

Eric Larson

75-20 Astoria Blvd., Suite 120

Jackson Heights, NY 11370

(718) 803-3782

(718) 512-0010

(866) 387-2196 (FAX)

www.spinalcord.org

1,2,3,4,5,7, 8 Englis, 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 (FAX)

info@fsma.org

www.curesma.org

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

materials

MEDICAL HOME PLUS, INC

Vicki Hardy-Murrell, RN-BSN

8719 Forest Hill Ave.

Richmond, VA 23235

(804) 330-5030

(877) 264-8366

(804) 330-5032 (FAX)

vhardy-murrell@medhome

plus.org

www.medicalhomeplus.org

1,2 English, Italian, Greek, Asian

Spinocerebellar Ataxia

See: Ataxia; Friedreich Ataxia

Splenic Anemia, Familial

See: Gaucher Disease

Spondyloepiphyseal

Dysplasia Congenita

See: Cleft Palate; Growth

Disorders; Visual Impairments

Spondyloepiphyseal

Dysplasia Tarda

See: Growth Disorders

SSPE

See: Subacute Sclerosing

Panencephalitis

STAR Protein Deficiency

See: Adrenal Disorders

Stargardt Disease

See: Macular Diseases;

Retinitis Pigmentosa;

Visual Impairments

Steely Hair Disease

See: Menkes Disease

Stengel Syndrome

See: Batten Disease

Stengel-Batten-Mayou-Spielmeyer-Vogt Disease

See: Batten Disease

Stickler syndrome

STICKLER INVOLVED PEOPLE (SIP)

Pat Houchin

15 Angelina

Augusta, KS 67010

(316) 259-5194

sip@sticklers.org

www.stickler.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

lwood@hsf.on.ca

www.heartandstroke.ca

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

NATIONAL STROKE ASSOCIATION

James Baranski

9707 E Easter Lane Building B

Centennial, CO 80112

(800) STR-OKES

(800) 787-6537

(303) 649-1328 (FAX)

Info@stroke.org

www.stroke.org

5 English, Spanish and French

Materials

Sturge-Weber Syndrome

STURGE-WEBER FOUNDATION (SWF)

PO Box 418

Mount Freedom, NJ 079700418

(800) 627-5482

(973) 895-4445

(973) 895-4846 (FAX)

swf@sturge-weber.org

www.sturge-weber.org

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

STURGE-WEBER FOUNDATION INC. (CANADA)

Kathleen Moore

1960 Prairie Ave

Port Coquitlam, BC V3B 1V4

(604) 942-9209

(604) 942-9209 (FAX)

sturge-weber@shaw.ca

www.sturge-weber.ca

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

Stuttering

STUTTERING FOUNDATION OF AMERICA

Jane Fraser

1805 Moriah Woods Blvd, Suite 3

PO Box 11749

Memphis, TN 38117-7119

(901) 761-0343

(901) 761-0484 (FAX)

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 DISORDERS & STROKE (NINDS)

Story C. Landis, Ph.D.

PO Box 5801

Bethesda, MD 20824

(800) 352-9424

(301) 496-5751

(301) 402-2186 (FAX)

www.ninds.nih.gov

1,2,4,7 English, Spanish

Succinylcholine Sensitivity

See: Malignant Hyperthermia

Sudden Infant Death

Syndrome (SIDS)

BABY'S BREATH

PO 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

CANADIAN FOUNDATION FOR THE STUDY OF INFANT DEATHS

60 James Street, Suite 403

St. Catharines, ON L2R 7E7

(905) 688-8884

(800) 363-7437

(905) 688-3300 (FAX)

sidsinfo@sidscanada.org

www.sidscanada.org

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

materials

NATIONAL SUID/SIDS RESOURCE CENTER

Georgetown University

Rochelle Mayer, Ed.D.

2115 Wisconsin Avenue,

N.W.Suite 601

Washington, DC 20007

(202) 687-7466

(202) 687-7466

(703) 821-2098 (FAX)

info@sidscenter.org

www.sidscenter.org

1,2,3,4 English, 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 (FAX)

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 02135

(800) 906-8723

(617) 277-4463

(617) 277-0134 (FAX)

info@ntsad.org

www.ntsad.org

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

TEF (Tracheoesophogeal Fistula)

TEF/VATER INTERNATIONAL SUPPORT NETWORK

Terri Burke

15301 Grey Fox Road

Upper Marlboro, MD 20772

(301) 952-6837

(301) 952-9152 (FAX)

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

See also: Hypoparathyroidism

THYROID FOUNDATION OF AMERICA

Judy Pate

410 Stuart Street

Boston, MA 02116

(800) 832-8321

(617) 534-1500

(617) 534-1515

info@tsh.org

www.allthyroid.org

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

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

Tooth and Nail Syndrome

See: Ectodermal Dysplasias

Torsion Dystonia, Idiopathic

See: Dystonia

Tourette Syndrome

See also: Attention Deficit

Disorder; Obsessive-Compulsive

Disorder

TOURETTE SYNDROME ASSOCIATION, 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 (FAX)

tsfc@tourette.ca

www.tourette.ca

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

French

Toxic Paralytic Anemia

See: Anemia, Aplastic

Treacher Collins Syndrome

See Craniofacial Disorders;

Hearing Impairments

Trichodentoosseous

Syndrome: Types I, II & III

See: Ectodermal Dysplasias

Trichodysplasia

Onychogryposis

Hypohidrosis-Cataract

See: Ectodermal Dysplasias

Trichofaciohypohidrotic

Syndrome

See: Ectodermal Dysplasias

Trichonychodental

Dysplasia

See: Ectodermal Dysplasias

Trichonychodysplasia

with Xeroderma

See: Ectodermal Dysplasias

Trichooculodermovertebral

Syndrome

See: Ectodermal Dysplasias

Trichoodontoonychial

Dysplasia

See: Ectodermal Dysplasias

TrichoodontoonychoHypohidrotic

Dysplasia

with Cataract

See: Ectodermal Dysplasias

Trichoodontoonychodermal

Syndrome

See: Ectodermal Dysplasias

Trichoodontoonychodysplasia

with Pili Torti

See: Ectodermal Dysplasias

Trichopoliodystrophy

See: Menkes Disease

Trichorhinophalangeal (TRP)

Syndrome

See: Ectodermal Dysplasias

Trichotillomania

See: Obsessive-Compulsive

Disorder

Triphalangeal Thumbs-Onychodystrophy-Deafness

See: Ectodermal Dysplasias;

Hearing Impairments

Trisomy 13

See: Chromosome 13 & 18

Disorders

Trisomy 18

See: Chromosome 13 & 18

DisordersTRP

(Trichorhinophalangeal)

Syndrome, TypeS I & II

See: Ectodermal Dysplasias

Tuberous Sclerosis

See also: Autism; Epilepsy;

Learning Disabilities

TUBEROUS SCLEROSIS ALLIANCE

Gail Alexander

801 Roeder Rd, Suite 750

Silver Spring, MD 20910

(800) 225-6872

(301) 562-9890

(301) 562-9870 (FAX)

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

Mary Edwards

30 Cleary Avenue, Room 9

Ottawa, ON K2A 4A1

613) 321-2267

(613) 321-2268 (FAX)

info@turnersyndrome.ca

www.turnersyndrome.ca

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

materials

Turner Syndrome

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 (FAX)

tssus@turnersyndrome.org

www.turnersyndrome.org

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

materials

Twin to Twin Transfusion

Syndrome

TWIN TO TWIN TRANSFUSION SYNDROME FOUNDATION

Mary Slaman-Forsythe

411 Longbeach Parkway

Bay Village, OH 44140

(800) 815-9211

(440) 899-8887

440-899-1184 (FAX)

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

www.twinhope.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

See also: Metabolic 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

VACTERL

See also: Anorectal

Malformations; CHARGE

Association; Heart Disorders;

Kidney Disorders; Limb

Disorders; Spina Bifida

THE VACTERL NETWORK

Josie Quijas

483 Melody Drive

Northglenn, CO 80260

(303) 880-3217

admin@vacterlnetwork.org,

www.vacterlnetwork.org

2,6,7,

Van Meerkeren I Syndrome

See: Ehlers-Danlos Syndrome

Vascular Malformations

See also: hemangioma

Klippel-Trenaunay Syndrome;

Sturge-Weber Syndrome; Von

Hippel-Lindau Syndrome

THE NATIONAL ORGANIZATION OF VASCULAR ANOMALIES

Karla Hall

PO Box 0358

Findlay, OH 45840

(419) 425-1593

(419) 425-1593 (FAX)

hemangnews@msn.com

www.novanews.org

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

Spanish

Vater Association

See: VACTERL Association

Velo-Cardio-Facial

Syndrome

See also: CHARGE Association;

Craniofacial Disorders; Heart

Disorders

NORTHEAST VCFS SUPPORT GROUP

Maureen Anderson

23-1 Norfolk St.

Hampstead, NH 03841

(603) 489-1393

MLADJA@aol.com

2,3 English

Ventilator Use

INTERNATIONAL VENTILATOR USERS NETWORK (IVUN)

Joan Headley

4207 Lindell Blvd, # 110

St Louis, MO 63108-2930

(314) 534-0475

(314) 534-5070 (FAX)

info@ventusers.org

www.ventusers.org

1,2,3,7,8

Ventricular Defects

See: Heart Disorders

Vermis Cerebellar Agenesis

See: Joubert Syndrome

Vestibular Disorders

VESTIBULAR DISORDERS ASSOCIATION

Cynthia Ryan

5018 NE 15th Avenue

Portland, OR 97211

(800) 837-8428

(503) 229-7705

(503) 229-8064 (FAX)

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 Boulevard, Suite 650

Arlington, VA 22201

(800) 424-8666

(202) 467-5081

(703) 465-5085 (FAX)

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 CHILDRENS FUND

Diana Popp

PO Box 187

Grand Ledge Oak, MI 48837

(989) 779-9966

(517).488-4887

(269) 756-3133 (FAX)

info@blindchildrensfund

www.blindchildrensfund.org

1,2,3,4 English

BLIND CHILDREN'S CENTER

Midge Horthon

4120 Marathon St,

Los Angeles, CA 90029-3584

(800) 222-3566

(323) 664-2153

(323) 665-3828 (FAX)

www.blindchildrenscenter.org

1,2,9 English, Spanish

BRAILLE INSTITUTE OF AMERICAN

741 N. Vermont Ave.

Los Angeles, CA 90029

(323) 663-1111

(800) BRA-ILLE (272-4553)

(323) 663-0867 (FAX)

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

FOUNDATION FIGHTING BLINDNESS

Mitsy Palmer

7168 Columbia Gateway Drive,

Suite 100

Columbia, MD 21046

(410) 423-0600

(800) 683-5555

(410) 363-2393 (FAX)

info@FightBlindness.org

www.FightBlindness.org

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

NATIONAL ASSOCIATION FOR PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS

Susan LaVenture

15 West 65th Street

New York, NY 10023

(800) 562-6265

napvi@guildhealth.org.

www.spedex.com/na pvi

1,5 English, Spanish

NATIONAL ASSOCIATION FOR VISUALLY HANDICAPPED

Dr. Lorraine H. Marchi

22 West 21st Street

New York, NY 10010

(212) 727-2931

(212) 889-3141 (FAX)

navh@navh.org

www.navh.org

1,2,4 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 (FAX)

contact@nbp.org

www.nbp.org

1,2 Braille

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 ext. 2360

(410) 685-5653 (FAX)

carrie.gilmer@gmail.com

www.nfb.org/nopbc

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

PREVENT BLINDNESS AMERICA

Sue Corbett

211 West Wacker Drive, Ste.

1700

Chicago, IL 60606

(800) 331-2020

(847) 843-2020

(312) 363-6052 (FAX)

info@preventblindness.org

www.preventblindness.org

1,2,3 English only

VISION WORLD WIDE, INC.

Patricia L. Price

5707 Brockton Dr., Ste. 302

Indianapolis, IN

46220-5481

(800) 431-1739

(317) 254-1332

(317) 251-6588 (FAX)

info@visionww.org

www.visionww.org

4

Vitiligo

NATIONAL VITILIGO FOUNDATION (NVF)

11250 Cornell Park Dr., Suite 207 B

Cincinnati, OH 45242

(513) 793-6834

info@mynvfi.org

www.nvfi.org

English

Von Gierke Disease

See: Glycogen Storage Diseases

Von Recklinghausen

Disease

See: Neurofibromatosis

Von Willebrand Disease

See: Hemophilia

Von Hippel-Lindau

Syndrome

VON HIPPEL LINDAU FAMILY ALLIANCE

Joyce Graff

2001 Beacon Street, Suite 208

Boston, MA 02135-7787

(617) 277-5667

(800) 767-4845

(858) 712-8712 (FAX)

info@vhl.org

www.vhl.org

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

Spanish, German, Japanese

WAGR Syndrome

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 English, Spanish

Walbaum-DeheaneSchlemmer

Syndrome

See: Ectodermal Dysplasias

Walker-Warburg Syndrome

See: Hydrocephalus;

Lissencephaly

Warburg Syndrome

See: Hydrocephalus;

Lissencephaly

Weber Syndrome

See: Sturge-Weber Syndrome

Wegener's Granulomatosis

See also: Immune Disorders

VASCULITIS FOUNDATION

PO Box 28660

Kansas Cit, 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

See also: Autism; Attention

Deficit Disorder; Growth

Disorders; Heart Disorders;

Learning Disabilities; Noonan

Syndrome

WILLIAMS SYNDROME ASSOCIATION

Mike C. McFall

570 Kirts Blvd Suite 223

Troy, MI 48084

(800) 806-1871

(248) 244-2230 (FAX)

info@williams-syndrome.org

www.williamssyndrome.org

2.8 English

Williams-Beuren Syndrome

See: Williams Syndrome

Wilm's Tumor

See: WAGR Syndrome, Genitalia,

Ambiguous

Wilson's Disease

See also: Liver disease

WILSON'S DISEASE ASSOCIATION

Mary Graper

5572 North Diversey Blvd

Milwaukee, WI 53217

(866) 961-0533

(414) 961-0533 (FAX)

info@wilsonsdisease.org

www.wilsonsdisease.org

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

Wiskott-Aldrich Syndrome

See: Immune Disorders;

PurpuIdiopathic Thrombocytopenia

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 (FAX)

lindad@childrenswish.org

www.childrenswish.org

1,2,3,8 English

Wolf-Hirschhorn Syndrome

See also: Chromosome 4p

X-Linked Copper

Deficiency

See: Menkes Disease

X-Linked Copper

Malabsorption

See: Menkes Disease

X-Linked Myotubular

Myopathy

See: Myotubular Myopathy, XLinked;

Muscular Dystrophy

Xanthogranulomatosis,

Juvenile

See: Histiocytosis

Xeroderma Pigmentosum

XP SOCIETY

437 Snydertown Rd

Craryville, NY 12521

(518) 851-3466

xps@xps.org

www.xps.org

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

Xeroderma-TalipesEnamel

Defect

See: Ectodermal Dysplasias

Xeroderma-Talipes-Enamel

Defect

See: Ectodermal Dysplasias

Zanier-Roubicek Syndrome

See: Ectodermal Dysplasias

Zellweger Syndrome

See: Leukodystrophy

Ziehen-Oppenheim Disease

See: Dystonia

KEY TO SERVICES

1. Periodical/newsletter

2. Informational materials

3. Networking/matching

4. Referrals to local resources

5. Local chapters

6. National conferences

7. National advocacy efforts

8. Fund research

9. Maintain research registry
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Publication:The Exceptional Parent
Article Type:Directory
Geographic Code:1USA
Date:Jan 1, 2015
Words:21416
Previous Article:Vidya Bhushan Gupta, MD, MPH, FAAP 1949-2014.
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