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Support for Barth Syndrome Awareness Day: Boosting Knowledge and Research

The U.S. House of Representatives supports designating April 5th as Barth Syndrome Awareness Day. This aims to increase public knowledge about this rare disease, encourage early diagnosis, and foster research into new treatments, offering hope to patients and their families.
Key points
Designating Barth Syndrome Awareness Day seeks to enhance public understanding of this rare and serious genetic disorder.
Support for research and development of new therapies, diagnostics, and cures, which is crucial for improving the lives of individuals affected by Barth syndrome.
Emphasizing the importance of early and accurate diagnosis, which can lead to better disease management and improved quality of life for patients.
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Additional Information
Print number: 118_HRES_276
Sponsor: Rep. Tonko, Paul [D-NY-20]
Process start date: 2023-04-03
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Summarized by: gemini-2.5-flash-preview-05-20
Source data: api.congress.gov
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OFFICIAL LEGAL TITLE

Expressing support for the designation of April 5, 2023, as "Barth Syndrome Awareness Day".

FREQUENTLY ASKED QUESTIONS

What is the official ID of this bill?

The official print number for this legislation is 118_HRES_276.

Which chamber initiated this legislation?

This legislation was initiated in the House of Representatives.

When did the legislative process begin?

The process officially started on 2023-04-03.

What are the main provisions?

Key points include:

  • Designating Barth Syndrome Awareness Day seeks to enhance public understanding of this rare and serious genetic disorder.
  • Support for research and development of new therapies, diagnostics, and cures, which is crucial for improving the lives of individuals affected by Barth syndrome.
  • Emphasizing the importance of early and accurate diagnosis, which can lead to better disease management and improved quality of life for patients.
What is the specific legal status?

The current status is Expired.

Where can I read the full text of this legislation?

The full official text is available at: View full text

Who is the primary sponsor?

The primary sponsor is Rep. Tonko, Paul [D-NY-20].

What is the latest detailed status?

The latest detailed status is: Referred to the Subcommittee on Health.

Is this summary verified?

Yes. This content was analyzed by AI and verified by the Lustra Judge System on 2025-12-24.

CATEGORIES

Health