Barth Syndrome

Self Help Clearinghouse

Barth Syndrome Foudation

(MULTILINGUAL) International. Founded 2000. Offers support to persons with Barth syndrome (cardiomyopathy, neutropenia, underdeveloped skeletal musculature and muscle weakness, growth delay, excersise intolerance, cardiolipin abnormalities, 3-methylglutaconic aciduria) and their families. Provides information, support, awareness, medical database and repository, diagnostic and clinical descriptions and fact sheets. Moderated listserv referrals, pen-pals and biennial conference. Peer-to-peer mentoring program.
Write:
Barth Syndrome Foundation, Inc.
P.O. Box 618
Larchmont, NY 10538
Voice: 850-223-1128
Fax: 518-213-4061
Website: http://www.barthsyndrome.org
Verified: 7/27/2012


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