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HRES 209

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

119th Congress Introduced by Jake Auchincloss and 13 co-sponsors

HRES 209 supports April 5, 2025, as Barth Syndrome Awareness Day to boost awareness, improve diagnosis, and advance research for this rare genetic disorder.

Submitted in House
0
WeVote Research Nonpartisan
Bill Summary · HRES 209

Summary of HRES 209: Barth Syndrome Awareness Day

Bill Overview

Bill Number: HRES 209
Title: Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day"
Status: Submitted in House
Introduced: March 10, 2025
Classification: Resolution

Purpose and Intent

The primary purpose of HRES 209 is to express support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day." This resolution aims to raise awareness about Barth syndrome, a rare genetic disorder that affects various bodily systems, particularly the heart and skeletal muscles.

Key Provisions

The resolution includes the following key provisions:

  1. Support for Awareness Day: The House of Representatives formally supports the establishment of Barth Syndrome Awareness Day.

  2. Recognition of Importance: The resolution emphasizes the need for:

    • Improving Awareness: Increasing public knowledge about Barth syndrome.
    • Encouraging Accurate and Early Diagnosis: Promoting timely identification of the condition to improve patient outcomes.
    • Advancing Research: Supporting scientific studies to better understand Barth syndrome.
    • Developing New Treatments: Fostering the creation of new therapies, diagnostics, and potential cures for the disease.
    • Identifying Regulatory Pathways: Establishing clear regulatory frameworks to facilitate drug development for ultrarare diseases like Barth syndrome.

Affected Parties

The resolution primarily impacts:
- Patients and Families: Individuals diagnosed with Barth syndrome and their families will benefit from increased awareness and potential advancements in treatment.
- Healthcare Providers: Medical professionals will gain insights into the importance of early diagnosis and treatment options.
- Researchers and Pharmaceutical Companies: The resolution encourages research initiatives and may lead to new opportunities for drug development.

Legislative Actions

  • March 10, 2025: The bill was referred to the House Committee on Energy and Commerce.
  • March 10, 2025: The bill was submitted in the House.

Sponsors

The resolution is sponsored by a bipartisan group of representatives, including:
- Primary Sponsor: Paul Tonko
- Cosponsors: Sheri Biggs, Mike Flood, Doris O. Matsui, Michael Guest, Sharice Davids, George Latimer, Ralph Norman, Jake Auchincloss, Joe Wilson, Gus M. Bilirakis, Morgan McGarvey, and Lori Trahan.

Conclusion

HRES 209 aims to promote awareness and understanding of Barth syndrome, advocating for improved diagnosis, research, and treatment options. By designating April 5, 2025, as Barth Syndrome Awareness Day, the resolution seeks to mobilize support for those affected by this rare condition and enhance the overall response to ultrarare diseases.

Compiled from official sources — confirm details with the bill’s official record.

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