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Where To Go for Support and Help

Bachmann-Strauss Dystonia & Parkinson Foundation

551 Fifth Avenue, Suite 520

New York, NY 10017

(212) 682-9900

Bachmann-Strauss Dystonia & Parkinson Foundation funds scientific research seeking to understand the causes of, and to find potential cures to, the movement disorders dystonia and Parkinson’s disease.

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 early ages.

Canavan Foundation

450 West End Avenue, #6A

New York, NY 10024

(212) 873-4640

(877) 4-CANAVAN

[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

[email protected]

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

Center for Jewish Genetic Diseases

Mount Sinai Medical Center

New York, NY 10029

(212) 659-6774

The Center for Jewish Genetic Diseases works to improve the diagnosis and treatment of Jewish genetic diseases, as well as the counseling of patients and their families, and to conduct intensive research to combat these diseases.

Chicago Center for Jewish Genetic Disorders

Ben Gurion Way

30 South Wells Street

Chicago, IL 60606

(312) 357-4718

[email protected]

The Chicago Center for Jewish Genetic Disorders works to provide public and professional education and to empower community members to seek out information and prevention strategies on 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

[email protected]

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

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 afflicted with familial dysautonomia.

Dystonia Medical Research Foundation

1 East Wacker Drive, Suite 2810

Chicago, IL 60601

(312) 755-0198

(800) 377-DYST

Fax: (312) 803-0138

[email protected]

The Dystonia Medical Research Foundation seeks to advance research for 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


[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.

FD Hope

121 S. Estes Drive, Suite 205D

Chapel Hill, NC 27514

(919) 969-1414

[email protected]

FD Hope funds research into potential treatments and cures for familial dysautonomia, provides support to FD families and patients, and promotes education and awareness of the disease.

Genetic Disease Foundation

1425 Madison Avenue, Box 1498

New York, NY 10029

(212) 659-6704

[email protected]

The Genetic Disease Foundation supports research, education and the prevention of genetic diseases.

Jacob’s Cure

P.O. Box 52

Rye, NY 10580

(914) 673-2796

[email protected]

Jacob’s Cure supports research into treatments for Canavan disease.

Jewish Genetic Disease Consortium

450 West End Avenue

New York, NY 10024

(866) 370-GENE

[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.

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.

National Gaucher Foundation

2227 Idlewood Road, Suite 12

Tucker, GA 30084

(800) 504-3189

[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

[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 Tay-Sachs and Allied Diseases Association

2001 Beacon Street, Suite 204

Brighton, MA 02135

(617) 277-4463

[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 RARE Project

24701 La Plaza, #201, Dana Point, CA 92629

[email protected]

The RARE Project mobilizes rare disease patients, parents and patient-advocates in order to bring about more effective and efficient development of rare disease therapies.

United Leukodystrophy Foundation

2304 Highland Drive

Sycamore, IL 60178

(800) 728-5483

[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 Center for Jewish Genetic Diseases

Albert Einstein Medical Center

Philadelphia, PA 19141

(215) 456-8722

[email protected]

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

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