Where To Go for Support and Help

Published August 03, 2011, issue of August 12, 2011.
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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

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.

CANAVAN FOUNDATION

450 West End Avenue, #6A

New York, NY 10024

Call or Fax: (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.

CANAVAN RESEARCH FOUNDATION

88 Route 37

New Fairfield, CT 06812

(203) 746-2436

Fax: (203) 746-3205

www.canavan.org

info@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/

jewishgeneticsctr@juf.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

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

Fax: (216) 251-6728

www.curetay-sachs.org/

questions@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

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

(800) 377-DYST

Fax: (312) 803-0138

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

Fax: (541) 687-0548

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.

FD HOPE

121 S. Estes Drive, Suite 205D

Chapel Hill, NC 27514

(919) 969-1414

Fax: (919) 969-1415

www.fdhope.org

info@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

gdf@mssn.edu

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

info@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

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

(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

ngf@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

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 TAY-SACHS AND ALLIED DISEASES ASSOCIATION

2001 Beacon Street, Suite 204

Brighton, MA 02135

(800) 906-8723

Fax: (617) 277-0134

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 RARE PROJECT

24701 La Plaza, #201

Dana Point, CA 92629

(949) 248-7273

www.rareproject.org

www.crdnetwork.org

info@rareproject.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

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

Fax: (212) 247-3079

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

2304 Highland Drive

Sycamore, IL 60178

(800) 728-5483

Fax: (815) 895-2432

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 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

info@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

jewishgenetichealth@yu.edu

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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