We are happy to announce that the 2026 event registration is now open. For information, check the BSF 2026 Conference webpage. Families are also invited to connect with Shelley Bowen to join our private conference Facebook group, and don’t miss Friday night’s social, “Come Where You’re From,” celebrating our global Barth community.

July 19-25, 2026

The Hyatt Regency Coconut Point Resort and Spa in Bonita Springs, Florida

The Barth Syndrome Foundation’s (BSF) biennial conferences bring affected families, research scientists, and clinicians together in one place at one time for a dual track meeting.

Doctors who might care for a single patient will have the opportunity to see well over 50 individuals with Barth syndrome at once; thereby, gaining a greater understanding of the breadth of the disorder. Additionally, they will be able to compare notes with other physicians and also hear from scientific experts about the latest discoveries and upcoming potential treatment options.

Scientists will hear presentations on colleagues’ recent work as well as learn from and have a chance to collaborate with experts in other fields. Furthermore, they will gain insight into the clinical aspects of the disorder and witness the medical ramifications of what they discover in the laboratory.

Families and individuals with Barth syndrome have a unique opportunity to be seen by the world’s greatest experts in Barth syndrome, contributing directly to the search for a cure by providing their information, their health history, and even their own tissue in addition to learning from experts and from each other so that they can better advocate for themselves or their child(ren).

• Previous conference brochures.
• Video Archives: Scientific & Medical Presentations, Family Sessions, Poster Corner, and Grand Rounds from previous conferences as well as other Educational videos and Meet Our Community (People We Serve and Clinicians and Scientists).
• Webinar and Roundtable Recordings.