Skip to main content
Go to Previous Slide Go to Next Slide

The only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome: a life-threatening genetic, multi-system disorder mostly affecting males.

January 24, 2025
byBarth Syndrome Foundation

The date by which FDA will let Stealth know whether they will approve elamipretide (the “PDUFA date”) has been delayed by three months. We had expected to know FDA’s decision by January 29 but now have learned that the new date is April 29, 2025.

January 16, 2025
byBarth Syndrome Foundation

The Barth Syndrome Foundation’s (BSF) international Scientific and Medical Advisory Board (SMAB) is a dedicated team of researchers and clinicians who generously donate their time and expertise to advance our mission. These professionals are critical partners in driving #BarthPROGRESS through groundbreaking research and improved care.

  • Barth Syndrome Foundation Family Services is a caring community offering vital information and credible resources.

  • Barth Syndrome Foundation is the worldwide hub of medical knowledge about Barth syndrome and encourages its progress.

  • Barth Syndrome Foundation is a global facilitator for advancing understanding of and developing treatments for Barth syndrome.

  • Keep up-to-date on the Barth Syndrome Foundation's latest news.

Sign up for our newsletter

Let's stay in touch. Sign up for our email newsletter and we'll keep you up-to-date on all the work BSF is doing. We promise to never share your e-mail address with others.

First Name *
Last Name *

Powered by Firespring