Barth Syndrome Foundation (BSF) International Scientific, Medical, and Family Conference 2026

Barth Syndrome Foundation (BSF) International Scientific, Medical, and Family Conference 2026 is organized by Barth Syndrome Foundation (BSF) and will be held from Jul 19 - 26, 2026 at Hyatt Regency Coconut Point Resort and Spa, Bonita Springs, Florida, United States of America.

Description:
To recognize attendees’ range of backgrounds and interests, Conference is divided into five tracks. Each track includes programming focused on topics and conversations for different members of our community.

Track 1 Family Education and Care Management
Connect with families worldwide while learning from Barth syndrome clinical experts. Sessions cover essential care management topics including cardiology, nutrition, mental health, and life transitions. Discussion groups provide support for affected individuals, parents, siblings, carriers, and extended family members navigating the unique challenges of living with this rare diseas

Track 2 On-Site Research
Participate in IRB-approved clinical studies at the world’s largest gathering of Barth syndrome families. Help advance scientific understanding through biological sampling, functional testing, cardiac imaging, and surveys. Participation is completely optional. Thank you to everyone who chooses to advance our collective understanding of Barth syndrome. 

Track 3 Research and Development
Explore cutting-edge science with a focus on “Navigating the Transition from Proof-of-Concept to Clinical Product” for our Research track. Conference will feature talks on basic biology, emerging therapeutics, and novel research tools, plus opportunities for new investigators including research spotlights, poster sessions, mentoring lunches, and networking events with world-renowned experts.

Track 4 Wellness and Inclusiveness
Find balance and connection through comprehensive programming designed to support mental and physical wellbeing. Daily activities include yoga (mat and chair options, including classes exclusively for affected individuals), meditation sessions, mindful breathing, sound baths, painting classes, chakra workshops, and volunteer-led support meetings for individuals in addiction recovery.

Track 5 Camp Barth
Camp Barth offers engaging, child-friendly programming overseen by Corporate Kids Events and Hyatt Camp Coconut with volunteer-led activities. This track includes science workshops, movies, crafts, and recreational activities for all ages. This track provides childcare during family sessions for all ages.