Barth syndrome is a rare, life-threatening genetic disorder that primarily affects males, causing heart and muscle abnormalities, dangerously low white blood cell counts, and growth delays. There are fewer than 150 diagnosed individuals in the entire U.S., and about half of those who die from it don't survive past their first birthday. This resolution supports designating April 5, 2025, as Barth Syndrome Awareness Day, and calls for better awareness, earlier diagnosis, more research, and the development of new treatments — noting that there is currently no FDA-approved treatment for the condition.
Congressional Summary
This resolution supports the designation of Barth Syndrome Awareness Day. Barth Syndrome is a rare, life-threatening genetic disorder of lipid metabolism that primarily affects males.
Details
- Congress
- 119th
- Chamber
- House
- Status
- summarized
- Action
- Introduced in House
- Action Date
- 2025-03-10
- Date Added
- 2026-04-09