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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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