Where To Go for Support and Help
Where To Go for Support and Help
BACHMANN-STRAUSS DYSTONIA & PARKINSON FOUNDATION
551 Fifth Avenue, Suite 520
New York, NY 10176
(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 for, 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 young ages.
CANAVAN FOUNDATION
450 West End Avenue, #6A
New York, NY 10024
Call or Fax: (866) 907-1847
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
Fax: (203) 746-3205
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.jewishgenetics.org/
The Chicago Center for Jewish Genetic Disorders 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
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
www.curetay-sachs.org/
The Cure Tay-Sachs Foundation funds research into 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 who have 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
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
Fax: (541) 687-0548
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
Fax: (919) 969-1415
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 provides support for research, education and efforts aimed at the prevention of genetic diseases.
JACOB’S CURE
P.O. Box 52
Rye, NY 10580
(914) 502-4249
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
(855) 642-6900
www.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
(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 6
Tucker, GA 30084
(800) 504-3189
Fax: (770) 934-2911
www.gaucherdisease.org
The National Gaucher Foundation funds research into 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
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
(800) 906-8723
Fax: (617) 277-0134
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
(949) 248-7273
www.rareproject.org
www.crdnetwork.org
The RARE Project mobilizes rare disease patients, parents and patient-advocates to bring about more effective and efficient development of rare-disease therapies.
SHARSHERET
1086 Teaneck Road, Suite 3A
Teaneck, New Jersey 07666
(866) 474-2774
(201) 833-2341
Fax: (201) 837-5025
www.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
Fax: (212) 247-3079
www.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
2304 Highland Drive
Sycamore, IL 60178
(800) 728-5483
Fax: (815) 895-2432
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 THE PREVENTION OF JEWISH GENETIC DISEASES
Albert Einstein Medical Center
5501 Old York Road, Levy 2 West
Philadelphia, PA 19141
(877) 401-1093
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.
YESHIVA UNIVERSITY PROGRAM FOR JEWISH GENETIC HEALTH
Yeshiva University
500 West 185th Street, BH 707
New York, NY 10033
(718) 430-4156
www.yu.edu/genetichealth
The Program for Jewish Genetic Health at Yeshiva University is a centralized resource for the Jewish community and future generations, addressing Jewish genetic health concerns from before birth to old age.
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