Barth Syndrome Foundation Inc

This conference which is held every two years, brings affected families, research scientists and clinicians together in one place at a time, so that they may collaborate and share their knowledge to gain a greater understanding of barth syndrome and learn about the latest discoveries and scientific research available. Families have a unique opportunity to be seen by the world's greatest experts, thereby, contributing directly to the search for a cure by prodiving information and tissue samples.

Bsf builds awareness of barth syndrome to improve diagnosis and care, while advancing advocacy efforts that amplify patient voices, mobilize our patient community, and support progress in research and treatment access and drug development policy

Represents awareness programs designed to ensure families, physicians, and researchers are aware of barth syndrome. These programs are comprised of services related to advocacy and awareness, communication and awareness, and family services.