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Support for Barth Syndrome Awareness Day: Boosting Knowledge and Research

This House of Representatives resolution supports designating April 5, 2024, as Barth Syndrome Awareness Day. The goal is to increase public awareness of this rare genetic disorder, which can aid in earlier diagnosis and the development of new treatments. For citizens, this means greater hope for progress in combating rare diseases and better support for affected families.
Key points
Establishing Barth Syndrome Awareness Day aims to increase knowledge about this rare disease, potentially leading to earlier diagnosis and better support for patients.
The resolution emphasizes the need for further research and development of new therapies, which could benefit individuals with Barth syndrome and other rare diseases.
Support for non-profit organizations like the Barth Syndrome Foundation helps in education and the search for cures, which is crucial for affected families.
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Additional Information
Print number: 118_HRES_1025
Sponsor: Rep. Tonko, Paul [D-NY-20]
Process start date: 2024-02-20
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OFFICIAL LEGAL TITLE

Expressing support for the designation of April 5, 2024, 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_1025.

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 2024-02-20.

What are the main provisions?

Key points include:

  • Establishing Barth Syndrome Awareness Day aims to increase knowledge about this rare disease, potentially leading to earlier diagnosis and better support for patients.
  • The resolution emphasizes the need for further research and development of new therapies, which could benefit individuals with Barth syndrome and other rare diseases.
  • Support for non-profit organizations like the Barth Syndrome Foundation helps in education and the search for cures, which is crucial for affected families.
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.

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