Get Help for Genetic Diseases

A Comprehensive List of Support Institutions

By Forward Staff

Published August 06, 2013, issue of August 16, 2013.
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Here is a list of institutions that provide treatment, support and testing for Jewish genetic diseases.

Bachmann-Strauss Dystonia & Parkinson Foundation
551 Fifth Avenue, Suite 520
New York, NY 10176
(212) 682-9900
www.dystonia-parkinson.org

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. It also provides medical and patient information.

Bloom’s Syndrome Foundation
7095 Hollywood Boulevard #583
Los Angeles, CA 90028
www.bloomssyndrome.org
info@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 young ages.

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Canavan Foundation
450 West End Avenue #6A
New York, NY 10024
(866) 907-1847
www.canavanfoundation.org
info@canavanfoundation.org

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

Center For Jewish Genetics
30 South Wells Street
Chicago, IL 60606
(312) 357-4718
www.jewishgenetics.org
jewishgeneticsctr@juf.org

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
www.curegsd.org
info@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/
questions@curetay-sachs.org

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

The Cystic Fibrosis Foundation
6931 Arlington Road, 2nd floor
Bethesda, Maryland 20814
(301) 951- 4422
http://www.cff.org/
info@cff.org

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
www.familialdysautonomia.org
info@famdys.org

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
www.dystonia-foundation.org
dystonia@dystonia-foundation.org

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
(888) FANCONI
www.fanconi.org
info@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.

FORCE: Facing Our Risk of Cancer Empowered
16057 Tampa Palms Blvd. W, PMB #373
Tampa, FL 33647
(866) 288-7475
www.facingourrisk.org
info@facingourrisk.org

FORCE is the only national not-for-profit organization devoted to the support, education, advocacy and research of hereditary breast and ovarian cancer.

Genetic and Rare Diseases Information Center
P.O. Box 8126
Gaithersburg, MD 20898-8126
(301) 251-4925
http://rarediseases.info.nih.gov/GARD
GARDinfo@nih.gov

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
www.geneticdiseasefoundation.org
gdf@mssn.edu

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
www.globalgenes.org

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
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.

Joubert Syndrome & Related Disorders Foundation
414 Hungerford Drive, Suite 252
Rockville, MD 20850
(614) 864-1362
www.joubertfoundation.com

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
www.ml4.org

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
www.msud-support.org

The MSUD Family Support 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
www.mda.org
mda@mdausa.org

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

National Gaucher Foundation
2227 Idlewood Road, Suite 6
Tucker, GA 30084
(800) 504-3189
www.gaucherdisease.org
ngf@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
nnpdf@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 Organization For Rare Disorders
55 Kenosia Avenue
Danbury, CT 06813-1968
(203) 744- 0100
www.rarediseases.org

The National Organization for Rare Disorders (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
www.ntsad.org
info@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 Organic Acidemia Association
Carol Barton, Director P.O. Box 1008 Pinole, CA 94564 (510)-672-2476 www.oaanews.org carolbarton@oaanews.org

The Organic Acidemia Association is a volunteer not-for-profit organization that provides support and information for those struggling with Organic Acidemia metabolic disorder.

Program for Jewish Genetic Health of Yeshiva University/Einstein
Yeshiva University
500 W. 185th Street, BH 707
New York, NY 10033
(718) 430-4156
www.yu.edu/genetichealth
jewishgenetichealth@yu.edu

The Program for Jewish Genetic Health addresses Jewish genetic concerns from before birth to old age. It recently launched the online educational series GeneSights — www.genesights.com — with videos about Jewish genetic diseases. Crohn’s disease/ulcerative colitis and breast/ovarian cancer are featured so far.

Sharsheret
1086 Teaneck Road, Suite 3A
Teaneck, New Jersey 07666
(866) 474-2774
(201) 833-2341
www.sharsheret.org
info@sharsheret.org

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
www.smafoundation.org
info@smafoundation.org

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 call: (815) 748- 3211
www.ulf.org
office@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 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
www.victorcenters.org
info@victorcenters.org

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.


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