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Get Help for Genetic Diseases

Here is a list of instutions that provide treatment and support and testing for Jewish genetic diseases.

Bachmann-Strauss Dystonia & Parkinson Foundation

551 Fifth Avenue, Suite 520

New York, NY 10176

(212) 682-9900

Fax: (212) 682- 6156

Bachmann-Strauss Dystonia & Parkinson Foundation funds scientific research seeking to understand the causes of and find potential cures for the movement disorders dystonia and Parkinson’s disease. They also provide medical and patient information.

Bloom’s Syndrome Foundation

7095 Hollywood Boulevard #583

Los Angeles, CA 90028

[email protected]

The Bloom’s Syndrome Foundation funds research aimed at the development of a therapy for Bloom’s Syndrome and the prevention of its complications, primarily the significant risk of developing cancers at young ages.

Canavan Foundation

450 West End Avenue #6A

New York, NY 10024

Call or Fax: (866) 907-1847

[email protected]

The Canavan Foundation works to prevent Canavan disease through education and testing and supports research to find a treatment for the disease.

Canavan Research Foundation

88 Route 37

New Fairfield, CT 06812

(203) 746-2436

Fax: (203) 746-3205

[email protected]

The Canavan Research Foundation supports research aimed at curing Canavan disease and other genetic brain diseases.

Center For Jewish Genetics

30 South Wells Street

Chicago, IL 60606

(312) 357-4718

[email protected]

The Center for Jewish Genetics works to provide public and professional education and to empower community members to seek information and prevention strategies for Jewish genetic disorders and hereditary cancers.

Children’s Fund For Glycogen Storage Disease Research

917 Bethany Mountain Road

Cheshire, CT 06410

(203) 272-CURE

[email protected]

The Children’s Fund for Glycogen Storage Disease Research raises money for research aimed at finding a cure for glycogen storage disease, type 1.

Cure Tay-Sachs Foundation

12730 Triskett Road

Cleveland, OH 44111

(216) 812-5855

Fax: (216) 251-6728

[email protected]

The Cure Tay-Sachs Foundation funds research seeking treatments and a cure for Tay-Sachs disease.

The Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

6931 Arlington Road, 2nd floor

Bethesda, Maryland 20814

Phone: (301) 951- 4422

[email protected]

The Cystic Fibrosis Foundation funds research seeking treatments and a cure for cystic fibrosis.

Dysautonomia Foundation

315 West 39th Street, Suite 701

New York, NY 10018

(212) 279-1066

[email protected]

The Dysautonomia Foundation supports medical treatment, research, public awareness and social services for the benefit of people who have familial dysautonomia.

Dystonia Medical Research Foundation

1 East Wacker Drive, Suite 2810

Chicago, IL 60601

(312) 755-0198

Fax: (312) 803-0138

[email protected]

The Dystonia Medical Research Foundation seeks to advance research into treatments for dystonia, promotes awareness and education and provides support to affected individuals and their families.

Fanconi Anemia Research Fund

1801 Willamette Street, Suite 200

Eugene, OR 97401

(541) 687-4658


Fax: (541) 687-0548

[email protected]

The Fanconi Anemia Research Fund works to find effective treatments for Fanconi anemia and to provide education and support services to affected families.

FORCE: Facing Our Risk Of Cancer Empowered

16057 Tampa Palms Blvd. W, PMB #373

Tampa, FL 33647


[email protected]

FORCE is the only national nonprofit organization devoted to the support, education, advocacy and research of hereditary breast and ovarian cancer.

Genetics And Rare Diseases Information Center

P.O. Box 8126

Gaithersburg, MD 20898-8126

Phone: 301-251-4925

Fax: 301- 241- 4911

Email: [email protected]

Web site:

GARD provides easily accessible information to the public about genetic and rare diseases.

Genetic Disease Foundation

1425 Madison Avenue, Box 1498

New York, NY 10029

(212) 659-6704

[email protected]

The Genetic Disease Foundation provides support for research, education and efforts aimed at the prevention of genetic diseases.

Global Genes Project

24701 La Plaza, Suite 201

Dana Point, CA 92629

(949) 248-7273

The Global Genes Project is a patient advocacy organization centered on raising public and physician awareness, education and community awareness and supporting research initiatives and cures for rare and genetic diseases..

Jewish Genetic Disease Consortium

450 West End Avenue

New York, NY 10024

(855) 642-6900

[email protected]

The Jewish Genetic Disease Consortium brings together organizations that combat Jewish genetic diseases in order to strengthen education and awareness as well as to encourage and facilitate genetic testing for carrier status.

Joubert Syndrome & Related Disorders Foundation

414 Hungerford Drive, Suite 252

Rockville, MD 20850

(614) 864-1362

The Joubert Syndrome & Related Disorders Foundation is an international network of parents who use their knowledge and experience to offer support for those with Joubert Syndrome and help raise public awareness about the disorder.

ML4 Foundation

719 East 17th Street

Brooklyn, NY 11230

(877) 654-5459

The ML4 Foundation supports medical research dedicated to developing effective treatments and a cure for Mucolipidosis type IV.

MSUD Family Support Group

Holmes Morton, N.D. Clinic for Special Children

P.O. Box 128 Strasburg, PA 17579

717- 687- 9407

Fax: 717-687- 9237

The MSUD Family Suppport Group provides MSUD patients and their families with information, newborn screening programs, and medical and nutritional advisors.

Muscular Dystrophy Association—USA

National Headquarters

3300 E. Sunrise Drive

Tucson, AZ 85718

(800) 572- 1717

[email protected]

MDA is a research and support network, that has a nationwide network of 200 medical clinics. It also sponsors summer camps, support groups, seminars, and many other programs for those Muscular Dystrophy.

National Gaucher Foundation

2227 Idlewood Road, Suite 6

Tucker, GA 30084

(800) 504-3189

Fax: (770) 934-2911

[email protected]

The National Gaucher Foundation funds research on Gaucher disease, promotes education and awareness, supports legislative issues and provides outreach programs.

National Niemann-Pick Disease Foundation

P.O. Box 49

401 Madison Avenue, Suite B

Fort Atkinson, WI 53538

(877) 287-3672

(920) 563-0930

Fax: (920) 563-0931

[email protected]

The National Niemann-Pick Disease Foundation supports research to find a cure or treatments for all types of Niemann-Pick Disease and provides support services to individuals and families affected by the disease.

National Organization For Rare Disorders

55 Kenosia Avenue

Danbury, CT 06813-1968

Phone: (203) 744- 0100

Fax: (203) 798- 2291

The National Organization for Rare Diseases (NORD) is a federation of voluntary health organizations that are dedicated to helping people with rare “orphan” diseases through education, advocacy, research and other services

National Tay-Sachs And Allied Diseases Association

2001 Beacon Street, Suite 204

Boston, MA 02135

(800) 906-8723

Fax: (617) 277-0134

[email protected]

The National Tay-Sachs and Allied Diseases Association promotes the prevention and treatment of Tay-Sachs in all its forms as well as other related genetic disorders and provides support services to affected families and individuals.

The Organic Acidemia Association

Carol Barton, Director

P.O. Box 1008

Pinole, CA 94564

[email protected]

Phone: 510-672-2476

The Organic Acidemia Association is a volunteer non-profit organization that provides support and information for those struggling with Organic Acidemia metabolic disorder.


1086 Teaneck Road, Suite 3A

Teaneck, New Jersey 07666

(866) 474-2774

(201) 833-2341

Fax: (201) 837-5025

[email protected]

Sharsheret, Hebrew for “chain,” supports young Jewish women and their families who are at risk for or facing breast cancer. It helps foster connections with networks of peers, health professionals and related resources.

Spinal Muscular Atrophy Foundation

888 Seventh Avenue, Suite 400

New York, NY 10019

NY Residents: (646) 253-7100

(877) FUND-SMA

Fax: (212) 247-3079

[email protected]

The Spinal Muscular Atrophy Foundation aims to find a cure or treatment for SMA by raising awareness of the disease at all levels of society, increasing government support and funding and spurring on drug development.

United Leukodystrophy Foundation

224 N. Second Street, Suite 2

Dekalb, IL 60115

(800) 728-5483

local number: (815) 748- 3211

Fax: (815) 748- 0844

[email protected]

The United Leukodystrophy Foundation supports individuals suffering from various types of leukodystrophies, such as Canavan disease, and provides assistance for their families. It also helps with research into these diseases.

Victor Centers for the Prevention of Jewish Genetic Diseases

Einstein Medical Center Philadelphia

5501 Old York Road, Levy 2 West

Philadelphia, PA 19141

(877) 401-1093

[email protected]

The Victor Centers for Jewish Genetic Diseases provide education, genetic counseling and carrier screening for Jewish genetic diseases. Victor Centers are located in Philadelphia, Boston and Miami.

Yeshiva University Program For Jewish Genetic Health

Yeshiva University

500 W. 185th Street, BH 707

New York, NY 10033

(718) 430-4156

[email protected]

The Program for Jewish Genetic Health at Yeshiva University is a centralized resource for the Jewish community and future generations, addressing Jewish genetic concerns from before birth to old age.


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