Search Results: keywords:"barth syndrome foundation"

  • H. RES. 209 — Expressing support for the designation of April 5, 2025, as Barth Syndrome Awareness Day.
    Status:Introduced in House
    Words:212

    H. RES. 209 expresses support for designating April 5, 2025, as Barth Syndrome Awareness Day. The resolution highlights the serious nature of Barth syndrome, a rare genetic disorder affecting mostly males, and the importance of increasing awareness, promoting early diagnosis,...

    Simple Explanation

    Imagine there's a special day called Barth Syndrome Awareness Day on April 5, 2025, where people learn about a rare illness mostly affecting boys, in hopes of finding ways to help them feel better and live healthier lives. This means talking about it more so doctors and scientists can help those with the illness.

  • H. RES. 1025 — Expressing support for the designation of April 5, 2024, as Barth Syndrome Awareness Day.
    Status:Introduced in House
    Words:193

    H. RES. 1025 is a resolution that supports designating April 5, 2024, as "Barth Syndrome Awareness Day." It aims to raise awareness about Barth syndrome, a rare genetic disorder that primarily affects males and can be life-threatening due to heart failure or infections. The resolution...

    Simple Explanation

    H. RES. 1025 is a suggestion to make April 5, 2024, "Barth Syndrome Awareness Day" to help people learn about a rare illness that mostly affects boys and can make them very sick. This day is meant to encourage finding better ways to identify and treat the disease and to say thank you to groups that support these efforts.