Barth Syndrome TrustRemoved January 2020
No longer registeredThis organisation was removed from the public charity register in January 2020. Its details are kept here for reference.
Barth syndrome is a rare life-threatening genetic disorder that affects boys. We support families and provide them with the tools for survival and quality of life. We work closely with the scientific, medical and educational community to promote early diagnosis, research and tre
About Barth Syndrome Trust
Barth syndrome is a rare life-threatening genetic disorder that affects boys. We support families and provide them with the tools for survival and quality of life. We work closely with the scientific, medical and educational community to promote early diagnosis, research and treatment. Membership is free and provides access to specialised multi-disciplinary clinics and international conferences.
Areas of focus
Cause