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Barth Syndrome Foudation

Barth Syndrome

Self Help Clearinghouse

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Barth Syndrome Foudation

(MULTILINGUAL) International. Founded 2000. Offers support to persons with Barth syndrome (cardiomyopathy, neutropenia, underdeveloped skeketal musculature and muscle weakness, growth delay, excersize intolerance, cardiolipin abnormalities, 3-methylglutaconic aciduria) and their families. Provides information, support, awareness, medical database, 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

E-mail: bsfinfo@barthsyndrome.org

Verified: 8/25/2011

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