We collectively and tenaciously work toward saving and improving the lives of those impacted by Barth syndrome, an ultra-rare, life-threatening genetic disorder. We aim for a world where everyone in our community can thrive and live the life they choose.

Meet Henry

This is our impact.

We exist to raise awareness for our cause and bring change to the lives of those we serve in our community. With your help we can make a difference. Learn more and get involved.

People Helped

1,000

Families

Barth Syndrome Foundation Family Services is a caring community offering vital information and credible resources.
Clinicians

Barth Syndrome Foundation is the worldwide hub of medical knowledge about Barth syndrome and encourages its progress.
Researchers

Barth Syndrome Foundation is a global facilitator for advancing understanding of and developing treatments for Barth syndrome.