CONNECTION. COMMUNITY. COLLABORATION.
Because no matter how difficult, we believe every life with Barth syndrome is worth saving.
Despite the global challenges of 2020, Barth Syndrome Foundation remains steadfast and tireless in our mission to save lives through education, advances in treatment, and finding a cure for Barth syndrome.
Barth syndrome is an ultra-rare and devastating disease associated with life-threatening infections, heart failure, fatigue and early death.
BSF has funded nearly $5.6M USD since 2000 and catalyzed over $30.7M USD in funding from other agencies to advance global scientific discoveries to end the suffering and loss of life from Barth syndrome.
We are the lifeline to families and individuals living with Barth syndrome around the world, offering 24/7 individualized support, educational conferences, a patient registry, and collaborations with specialist healthcare providers to define standards of care, treatment and rapid diagnosis.