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Resources: Internet
For information about support groups related to genetic disease:
Alliance of Genetic Support Groups
4301 Connecticut Avenue, NW, #404
Washington, DC 20008
Tel: (202) 966-5557
Tel: (800) 336-GENE
www.geneticalliance.org
For information about other rare genetic conditions:
National Organization for Rare Disorders, Inc. (NORD)
P.O. Box 8923
New Fairfield, CT 06812
Tel: (203) 746-6518
Tel: (800) 999-6673
www.rarediseases.org/
For information about referrals for genetic counseling:
National Society of Genetic Counselors
233 Canterbury Drive
Wallingford, PA 19086
Tel: (610) 872-7608
www.nsgc.org
Foundations that focus on specific diseases:
Bloom’s Syndrome Registry
James L. German III, M.D.
Professor, Departments of Pediatrics and Microbiology
Cornell University Medical College
1300 York Avenue
New York, NY 10021
Tel: (212) 746-3956
The Canavan Foundation
600 West 111th Street
New York, NY 10025
Tel: (212) 316-6488
www.canavanfoundation.org
Dysautonomia Foundation, Inc.
633 Third Ave, 12th Floor
New York, NY 10017-6706
Tel: 212-949-6644
Fax: 212-682-7625
E-mail: info@familialdysautonomia.org
www.familialdysautonomia.org
Dystonia Medical Research Foundation
1 East Wacker Drive, #2430
Chicago, IL 60601
Tel: (312) 765-0198
Fax: (312) 803-0138
www.dystonia-foundation.org
Dystonia Research Center
Stanley Fahn, M.D., Director
New York Presbyterian Hospital
710 West 168th Street
New York, NY 10032
Tel: (212) 305-5779
Familial Dysautonomia Treatment and Evaluation Center
Felicia B. Axelrod, M.D., Director
New York University Medical Center
530 First Avenue, Suite 3A
New York, NY 10017
Tel: (212) 263-7225
www.med.nyu.edu/fd
Fanconi Anemia Research Fund, Inc.
1902 Jefferson Street, Suite 2
Eugene, OR 97405
Tel: (541) 687-4658
www.fanconi.org
Late-Onset Tay-Sachs Foundation (LOTS)
1303 Paper Mill Road
Erdenheim, PA 19038
Tel: (215) 836-9426
Tel: (800) 672-2022
www.lotsf.org
Mucolipidosis IV Foundation
Randy Yudenfriend Glaser, President
719 East 17th Street
Brooklyn, NY 11230
Tel: (718) 434-5067
www.ML4.org/
National Gaucher Foundation
11140 Rockville Pike, Suite 350
Rockville, MD 20852
Tel: (301) 816-1515
Tel: (800) 925-8885
www.gaucherdisease.org
National Niemann-Pick Disease Foundation
Barb Vorpahl, Director of Support Services
3734 East Olive Avenue
Gilbert, AZ 85234
Tel: (920) 563-8677
Tel: (877) 287-3672
www.nnpdf.org/
National Tay-Sachs & Allied Diseases Association, Inc.
2001 Beacon Street, Suite 204
Brighton, MA 02135
Tel: (617) 277-4463
Tel: (800) 90-NTSAD
www.ntsad.org/
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