Self Help Clearinghouse
Barth Syndrome Foudation
(MULTILINGUAL) International. Founded 2000. Offers support to persons with Barth syndrome 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.
Barth Syndrome Foundation, Inc.
P.O. Box 618
Larchmont, NY 10538