The Barth Syndrome Foundation’s International Scientific, Medical, and Family Conference is the largest gathering of the global Barth syndrome community. Every two years, our conference welcomes affected individuals, caregivers, researchers, clinicians, and healthcare leaders together in one place at one time. It is proof that we are stronger together.
Barth families are at the heart of everything we do. A major focus of the conference is to build meaningful connections among affected individuals, caregivers, and family members.
Following the first-ever drug approval for Barth syndrome, this year's research track explores translating breakthroughs into therapies—from novel drug development approaches to regulatory pathways.
Learn about the latest advances in Barth syndrome care management across cardiology, metabolism, hematology, and interventional therapies. Connect with multidisciplinary experts and hear directly from patients to improve health outcomes.
Gain insights into rare disease drug development, patient experience, regulatory pathways, and clinical trial design. Network with key opinion leaders, researchers, and patient advocates driving innovation in ultra-rare disease therapeutics.
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 disease.
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.
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.
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.
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.
The Hyatt standard room has a maximum occupancy of four guests. If you have a group of five or six people who need to stay in one room, please make your reservation for four guests and contact Michael with the names of all your guests attending. We will attempt to upgrade you to a larger room suitable for up to six guests.
Accessible Rooms (ADA Compliant) are not available through the conference reservation page below but can be arranged upon request. If you require an Accessible Room, please make your reservation for a standard room and contact Michael with your choice of either a Single King or Double Queen room with either an accessible tub or accessible shower.
If you have questions about booking hotels, please contact Michael.
Hyatt Regency Coconut Point Resort and Spa
5001 Coconut Road
Bonita Springs, Florida 34134
United States
The closest airport is Southwest Florida International Airport (RSW), approximately a 25-minute drive to the Hyatt Regency Coconut Point Resort and Spa.
Uber and Lyft are both available in the area. The Hyatt Regency Coconut Point is in Zone 3 for airport taxi. Additional transportation options may be found on the Southwest Florida International Airport’s Transportation Page.
Please contact us if you require a letter of invitation to the meeting. Please note that letters are only provided for non-North American who have already registered for the conference.
CVS Pharmacy 24800 S. Tamiami Trail, Bonita Springs (3 miles from hotel)
Walgreens Pharmacy 25091 S. Tamiami Trail, Bonita Springs (3.5 miles from hotel)
NHC Bonita Springs Emergency Department 24040 S. Tamiami Trail, Bonita Springs (2.3 miles from hotel)
Golisano Children’s Hospital of Southwest Florida 9981 S. Health Park Dr., Ft. Myers (15.5 miles from hotel)
This biennial gathering is a unique event because it brings together people from all areas of the Barth community: families, researchers, clinicians, and healthcare leaders. For families, the conference is a chance to connect with others who understand the journey, hear about the latest science, and get to know the BSF team. For researchers, it is a chance to connect with peers and families, conduct IRB-approved studies, and stay on the cutting edge of the field. For everyone, it builds the community and knowledge that make us #BarthStrong.
Our conference is special because it connects people from across industries, geographies, and communities.
We welcome affected individuals, caregivers and family members, scientists and researchers, clinicians, healthcare leaders, and other members of the broader rare disease community. Anyone with a personal or professional connection to Barth syndrome or the concerns of rare disease communities will find the conference interesting.
The conference in organized into five tracks for different interests:
You can read more on the agenda page.
Please reach out us here, and we will add you to a private Facebook group for families attending.
To encourage caregiver participation throughout the conference, age-appropriate youth activities and childcare are available. Camp Barth offers a range of engaging, child-friendly activities overseen by professional childcare providers. Volunteer-led activities include an educational and fun science workshop for kids, movies, and crafts. You will be able to register for childcare at the time of conference registration.
For the first three days, there will be limited childcare available for children who are potty trained. Starting with the formal sessions on Thursday, Camp Barth will offer childcare and age-appropriate activities up to age 17 for all children. You will be able to register for the Camp Barth track and for additional childcare during registration. While BSF largely funds all childcare, there is a nominal fee for registration.
Programming will begin early Monday morning and continue through Saturday. If you plan to take advantage of the full agenda, we recommend arriving on Sunday. Onsite research participation opportunities for families will take place Monday through Wednesday.
We aim to keep Conference accessible, especially for our families. We provide a limited number of scholarships to families. Stay tuned for more details. Early bird pricing runs until February 28. Regular pricing runs from March 1 – June 29. Late pricing begins after June 30. All prices are in USD and per person.
Across all three days, scientific talks will highlight scientific advances and facilitate the exchange of ideas and resources through presentations on the basic biology of the disease, emerging therapeutics, and novel research tools for Barth syndrome. We have also curated a series of opportunities geared toward new investigators, such as the SciMed “meet and greet”, research spotlights, poster blitz and session, mentoring lunch, and scientific happy hour. Researchers can reach out us here with questions or view the 2024 agenda for sample programming.
Everything we do is powered by our community, including our conference. Here’s how you can get involved:
We’re so glad you want to get involved. We’re looking for onsite volunteers, donors, and sponsors. Please reach out here if you’re interested in contributing!
Everything we do is powered by our community, including Conference.
