Where To Go for Support and Help
Bachmann-Strauss Dystonia & Parkinson Foundation
551 Fifth Avenue, Suite 520
New York, NY 10017
(212) 682-9900
www.dystonia-parkinsons.org
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
www.bloomssyndrome.org
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
www.canavanfoundation.org
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
www.canavan.org
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
www.mssm.edu/jewish_genetics/
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
www.jewishgeneticscenter.org/
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
www.curegsd.org
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
www.curetay-sachs.org/
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
www.familialdysautonomia.org
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
www.dystonia-foundation.org
dystonia@dystonia-foundation.org
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
(888) FANCONI
www.fanconi.org
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
www.fdhope.org
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
www.geneticdiseasefoundation.org
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
www.jacobscure.org
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
www.jewishgeneticdiseases.org
info@jewishgeneticdiseases.org
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
www.ml4.org
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
www.gaucherdisease.org
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
www.nnpdf.org
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
www.ntsad.org
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
www.rareproject.org
www.crdnetwork.org
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
www.ulf.org
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
www.victorcenters.org
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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