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119-hres-209119th Congress

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

Sponsored By: Representative Tonko, Paul [D-NY-20]

Introduced

Summary

This bill would designate April 5, 2025 as "Barth Syndrome Awareness Day" to raise public attention for a rare, life‑threatening genetic disorder. It notes that Barth syndrome is caused by mutations in the TAFAZZIN gene, mainly affects males, often leads to heart and skeletal muscle problems, low neutrophil counts, growth delays, and high childhood mortality, and that roughly 300 people worldwide and fewer than 150 in the United States are diagnosed; the resolution also highlights that no FDA‑approved treatment exists, only one U.S. interdisciplinary clinic specializes in care, and that improving awareness, earlier diagnosis, research, new treatments, and regulatory pathways for ultrarare diseases is critical.

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Bill Overview

No Economic Impacts Identified for this Bill

Sponsors & CoSponsors

Sponsor

Tonko, Paul [D-NY-20]

NY • D

Cosponsors

  • Rep. Bilirakis, Gus M. [R-FL-12]

    FL • R

    Sponsored 3/10/2025

  • Rep. Matsui, Doris O. [D-CA-7]

    CA • D

    Sponsored 3/10/2025

  • Rep. Norman, Ralph [R-SC-5]

    SC • R

    Sponsored 3/10/2025

  • Rep. Trahan, Lori [D-MA-3]

    MA • D

    Sponsored 3/10/2025

  • Rep. Wilson, Joe [R-SC-2]

    SC • R

    Sponsored 3/10/2025

  • Rep. Auchincloss, Jake [D-MA-4]

    MA • D

    Sponsored 3/10/2025

  • Rep. McGarvey, Morgan [D-KY-3]

    KY • D

    Sponsored 3/18/2025

  • Rep. Davids, Sharice [D-KS-3]

    KS • D

    Sponsored 3/18/2025

  • Rep. Biggs, Sheri [R-SC-3]

    SC • R

    Sponsored 3/18/2025

  • Rep. McGuire, John J. [R-VA-5]

    VA • R

    Sponsored 3/31/2025

  • Rep. Flood, Mike [R-NE-1]

    NE • R

    Sponsored 4/1/2025

  • Rep. Latimer, George [D-NY-16]

    NY • D

    Sponsored 4/2/2025

  • Rep. Guest, Michael [R-MS-3]

    MS • R

    Sponsored 4/8/2025

  • Rep. Neguse, Joe [D-CO-2]

    CO • D

    Sponsored 9/16/2025

Roll Call Votes

No roll call votes available for this bill.

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