The Barth Syndrome Foundation

The Barth Syndrome science, medicine & research program in 2023 was comprised of a) The bsf research program to foster scientific and clinical investigations into Barth Syndrome to facilitate The development of a specific treatment or a cure for this disease, and b)the Barth Syndrome medical database and bio-repository for The collection and storage of medical information/samples on individuals with Barth Syndrome over time to gain a better understanding of The disease.

The therapy fund for The advancement of therapies for Barth Syndrome will be used exclusively for The development of therapies designed to prevent, alleviate, or eliminate The symptoms of Barth Syndrome.

This conference which is held every two years, brings affected families, research scientists and clinicians togehter 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. Due to covid-19, regional meetings were held in 2023. The conference continues to be a key pillar of The organization.

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.