Barth Syndrome Foundation

The Barth Syndrome Foundation (BSF) is 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. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is 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. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.