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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.

June 28, 2022

We at BSF express our heartfelt gratitude to Bryan D, Steven G and Walker B for recently meeting with legislators in their home States. All three volunteer ambassadors participated in a national campaign for better U.S. Food and Drug Administration (FDA) review processes for ultra-rare indications, like Barth syndrome.  

Efforts by Bryan, Steve, and Walker were focused on greater transparency and...

June 15, 2022

Boston, June 15, 2022 - Stealth BioTherapeutics (Stealth) announced yesterday that the U.S. Food and Drug Administration (FDA) has granted the company a meeting to discuss a possible new drug application (NDA) for elamipretide as a potential treatment for Barth syndrome. The company intends to present new data collected during the Open Label Extension (OLE) period.

  • 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.

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