Barth Syndrome Foundation, Inc.

Barth Syndrome Foundation, Inc.
675 VFW Parkway #372
Chestnut Hill,  MA  02467
Tel: 617-469-6769
EMail: bsfinfo@barthsyndrome.org
http://www.barthsyndrome.org

Description: Supports families and individuals affected by Barth syndrome through education, awareness, and research grant programs. Works with physicians to improve diagnosis and treatment and stimulates scientific advances ultimately in pursuit of a cure.

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National 501(c) tax-exempt organizations offer a comprehensive program of information and support services for patients and their families. They may offer patient and professional information and education materials, sponsor meetings and scientific workshops, fund research, and provide referrals to chapters and support groups.