Support Groups

Supporting the Fabry community

Many of the websites listed here offer support groups, newsletters, and clinical trial updates, including recruitment announcements for upcoming trials. These sites and their contents are maintained by the organizations listed below. Genzyme Corporation does not endorse these sites, nor is it responsible for their content or maintenance.

Fabry support sites in the United States

Fabry Support and Information Group
www.fabry.org
Email: jjohnson@fabry.org
660-463-1355
Fax: 660-463-1356

Genetic Alliance
www.geneticalliance.org
Email: info@geneticalliance.org
202-966-5557, 800-336-GENE (-4363)
Fax: 202-966-8553

National Fabry Disease Foundation
www.theNFDF.org
Email: info@theNFDF.org
800-651-9131
Fax: 800-651-9135

National Institute of Neurological Disorders and Stroke (NINDS)
National Institutes of Health
www.ninds.nih.gov

National Organization for Rare Disorders (NORD)
www.rarediseases.org
Email: orphan@rarediseases.org
203-746-6518, 800-999-NORD (-6673)
Fax: 203-746-6481

New England Fabry Support Group
www.nefsg.org
Email: webmaster@nefsg.org