Disorder Associations & Foundations

Genetics & Genetic Diseases: Associations & Foundations

Jews are at risk for certain genetic diseases. The following organizations are devoted to community awareness and research of these disorders. For more information, or to find out about testing sites, please contact the appropriate organizations listed below. Also consult your doctor.

BLOOM SYNDROME

Bloom Syndrome Registry
The New York Blood Center
Laboratory of Molecular Genetics
310 East 67th Street
New York, NY 10021
Phone: (212) 570-3075
Fax: (212) 570-3195
E-mail: jlg2003@med.cornell.edu

CANAVAN DISEASE

Canavan Foundation
110 Riverside Drive #4F
New York, NY 10024
Phone: (212) 873-4640
Toll Free: (877) 4-canavan
Fax: (212) 873-7892
E-mail: canavandisease@aol.com
Website: www.canavanfoundation.org

Canavan Research Foundation /Canavan Research Fund
New Fairfield, CT
Phone: (914) 921-6924
Fax: (914) 921-2424
Email: canavan_research@hotmail.com, for the fund email: rkarlin@pol.net
Website: www.canavan.org

Canavan Research Illinois
P. O. Box 8194
Rolling Meadows, IL 60067
Phone: (800) 833-2194
Phone2: (847) 222-0736
Email: canavan@canavanresearch.org
Website: http://www.canavanresearch.org
A 501( c ) ( 3 ) charity, based in Illinois, dedicated to funding medical research to cure Canavan disease, network affecting families, and raise awareness of carrier testing for this fatal childhood neurodegenerative disease.

United Leukodystrophy Foundation
Canavan Disease
2304 Highland Drive
Sycamore, IL 60178
Phone: (815) 895-3211
Phone 2: (800) 728-5483
Fax: (815) 895-2432
Email: ulf@tbc.net.com
Website: http://www.ulf.org
Contact: Paula Brazeal

DYSAUTONOMIA

Dysautonomia Foundation Inc.
633 Third Avenue
12th Floor
New York, NY 10017
Phone: (212) 949-6644
Fax: (212) 682-7625
Email: dys212@aol.com
Website: www.familialdysautonomia.org

Familial Dysautonomia Hope Foundation
(FD Hope)
605 5th Avenue, NE
Conover, NC 28613
Phone: (828) 695-1060
E-mail: info@fdvillage.org
Website: www.fdvillage.org

National Dysautonomia Research Foundation
421 West Fourth Street Suite #9
Red Wing, MN 55066-2555
Phone: (651) 267-0525
Fax: (651) 267-0524
E-mail: ndrf@ndrf.org
Website: www.ndrf.org

DYSTONIA

Dystonia Medical Research Foundation
One East Wacker Drive
Suite 2430
Chicago, IL 60601
Phone: (312) 755-0198
In Canada: (800) 361-8061
Fax: (312) 803-0138
Email: dystonia@dystonia-foundation.org
Website: http://www.dystonia-foundation.org

Bachman-Strauss Dystonia & Parkinson Foundation
Mount Sinai Medical Center
One Gustave Levy Place Box 1490
New York, NY 10029
Phone: (212) 241-5614
Fax: (212) 987-0662
Email: bachmann.strauss@mssm.edu
Website: www.dystonia-parkinsons.org

FANCONI ANEMIA

Fanconi Anemia Research Fund, Inc.
1801 Willamette Street Suite #200
Eugene, OR 97401
Phone: (541) 687-4658
Fax: (541) 687-0548
E-mail: info@fanconi.org
Website: www.fanconi.org

GAUCHER DISEASE

National Gaucher Foundation
Chicago Chapter
3800 Green Acre Drive
Northbrook, IL 60062
Phone: (847) 564-1227
Phone 2: (847) 604-0088
Contact: Ann Genender

National Gaucher Foundation
5410 Edson Lane Suite #260
Rockville, MD 20852-3130
Phone: (301) 816-1515
Toll Free: (800) 428-2437
Fax: (301) 816-1516
E-mail: ngf@gaucherdisease.org
Website: www.gaucherdisease.org

MUCOLIPIDOSIS IV

ML4 Foundation
719 East 17th Street
Brooklyn, NY 11230
Phone: (718) 434-5067
Fax: (718) 859-7371
E-mail: ml4www@aol.com
Website: www.ml4.org

NIEMANN-PICK DISEASE

National Niemann-Pick Disease Foundation
22201 Riverpoint Trail
Carrollton, VA 23314
Phone: (804) 357-6774

National Niemann-Pick Foundation
PO Box 49 415 Madison Avenue
Ft. Atkinson, WI 53538
Ph: (920) 563-0930
Toll Free: (877) CURE-NPC
Fax: (920) 563-0931
E-mail: nnpdf@idcnet.com
Website: www.nnpdf.org

TAY-SACHS DISEASE

National Tay-Sachs and Allied Diseases Foundation
(NTSAD)
2001 Beacon Street
Suite 204
Brighton, MA 02135
Phone: (800) 906-8723
Phone 2: (617) 277-4463
Fax: (617) 277-0134
Email: ntsad-boston@worldnet.att.net
Website: http://www.ntsad.org
Contact: Jayne Gerskowitz
Dedicated to treatment and prevention of Tay-Sachs, Canavan and related diseases. Information and services to individuals and families. Public and professional education, research, genetic screening, family services and advocacy.

Tay-Sachs and Allied Diseases Delaware Valley
101 Greenwood Avenue Suite 570
Jenkintown, PA 19046
Phone: (215) 887-0877
Fax Number: (215) 887-1931
Email: NTSAD@aol.com
Website: www.tay-sachs.org

Late-Onset Tay-Sachs Foundation
1303 Paper Mill Road
Erdenheim, PA 19038
Phone: (800) 672-2022
Phone2: (215) 836-9426
Fax: (215) 836-5438
Email: mpf@bellatlantic.net
Website: http://www.lotsf.org
Contact: Marc Fishbein

OTHER JEWISH GENETIC DISORDER ASSOCIATIONS & FOUNDATIONS

National Foundation for Jewish Genetic Diseases
250 Park Avenue
Suite 1000
New York, NY 10177
Phone: (212) 371-1030
Fax Number: (212) 319-5808

Other Genetic Associations & Foundations

March of Dimes
Greater Illinois Chapter
111 West Jackson Street
22nd Floor
Chicago, IL 60604
Phone: (312) 435-4007
Fax: (312) 435-0988
Contact: Gail Wilson, Executive Director
Email: gwilson2@modimes.org
Website: http://www.modimes.org or http://www.marchofdimesillinois.org
A national voluntary health agency whose mission is to improve the health of babies by preventing birth defects and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education, and advocacy to save babies.

National MPS Society (Mucopolysacchaudoses)
102 Aspen Drive
Downingtown, PA 19335
Phone: (610) 942-0100
Fax: (610) 942-7188
Email: info@mpssociety.org
Website: http://www.mpssociety.org
Contact: Barbara Wedehase, Executive Director

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MO 20910
Phone: (800) 255-6872
Fax:(301) 562-9870
Email: info@tsalliance.org
Website: http://www.tsalliance.org

This page last updated on January 10, 2003.