Bill · H.Res. 209· House(119-HRES-209)

Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".

Age: 77 years

New York

Introduced: 3/10/2025
Last activity: 3/10/2025 — Referred to the House Committee on Energy and Commerce.
Sponsored by: Paul Tonko
Cosponsors: - 7 - 7

Health

Introduced
In Committee

A House resolution is the House speaking for itself: stating a position, honouring someone, or setting its own rules. Adopting it is the whole process. Once the House agrees to it, it is officially the House's word; it is not a law, so the Senate and the President have no part in it.

What this bill would do

This resolution expresses support for designating April 5, 2025, as "Barth Syndrome Awareness Day." The bill highlights that Barth syndrome is a rare, life-threatening genetic disorder that primarily affects males and can cause fatal heart failure or infection. It notes that patients face challenges such as difficulty obtaining diagnoses and limited treatment options. The resolution emphasizes the need for increased research and development to advance treatments. By designating this day, the House of Representatives aims to increase awareness and support for those affected.

Yes· 3 of 7

Would children be better off under this?+3
Barth syndrome can be fatal in childhood, and this resolution aims to advance treatments.
Would men be better off under this?+3
The resolution notes that Barth syndrome primarily affects males.
Would people with disabilities be better off under this?+3
The resolution advocates for increased research and diagnosis for a life-threatening genetic condition.