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
- Source
- Congress.gov →
Like reading a bill in plain English?
We're building an app that does this for every bill in Congress and lets you tell your reps how you want them to vote. We're a small team getting ready to launch, and we're trying to show investors that real people want this. Be one of them. Help us get it built. Leave your email and we'll tell you the moment the app is ready.