Barth Syndrome Foundation, Inc.
P.O. Box 974
Perry, FL 32348
Tel: 850-223-1128
Email: info@barthsyndrome.org
http://www.barthsyndrome.org
Description: Not-for-Profit organization established to support the needs of families and individuals affected by Barth Syndrome.
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.