Who sponsored HRES 209?

HRES 209 was sponsored by Paul Tonko (D), Rep.

Recognizes Barth Syndrome Awareness Day

IntroducedMarch 10, 2025

1 year ago

Intro

House

Referred to the House Committee on Energy and Commerce.

Health

Why This Matters

This resolution expresses support for designating April 5, 2025, as Barth Syndrome Awareness Day to promote awareness and understanding of the disorder.

If you know someone with Barth syndrome, this resolution aims to increase awareness and support for fewer than 150 diagnosed individuals in the U.S.

Who this affects

individuals with Barth syndrome · families · healthcare providers

What does this resolution do?

1This resolution supports April 5, 2025, as Barth Syndrome Awareness Day to raise public awareness.
2Barth syndrome is a rare genetic disorder affecting mainly males and can lead to serious health issues.
3The resolution emphasizes the need for better diagnosis, research, and treatment options for Barth syndrome.
4Fewer than 150 individuals in the United States are diagnosed with Barth syndrome, highlighting its rarity.
5The Barth Syndrome Foundation sponsors this awareness day to help families and patients find support.

Read the detailed 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.

Read full document

Recognizes Barth Syndrome Awareness Day

IntroducedMarch 10, 2025

1 year ago

Intro

House

Referred to the House Committee on Energy and Commerce.

Health

Why This Matters

This resolution expresses support for designating April 5, 2025, as Barth Syndrome Awareness Day to promote awareness and understanding of the disorder.

If you know someone with Barth syndrome, this resolution aims to increase awareness and support for fewer than 150 diagnosed individuals in the U.S.

Who this affects

individuals with Barth syndrome · families · healthcare providers

What does this resolution do?

1This resolution supports April 5, 2025, as Barth Syndrome Awareness Day to raise public awareness.
2Barth syndrome is a rare genetic disorder affecting mainly males and can lead to serious health issues.
3The resolution emphasizes the need for better diagnosis, research, and treatment options for Barth syndrome.
4Fewer than 150 individuals in the United States are diagnosed with Barth syndrome, highlighting its rarity.
5The Barth Syndrome Foundation sponsors this awareness day to help families and patients find support.

Read the detailed 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.

Read full document