# 119-hres-209: Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".

119-hres-209, Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day"., is a 119th Congress bill sponsored by Rep. Tonko, Paul [D-NY-20] (D-NY); status introduced (as of 2026-04-21).

- Canonical: https://policyrisk.com/legislation/119-hres-209
- As of: 2026-04-21
- Plain-text twin of the page above; the HTML and this file carry the same facts.

## Facts
- Bill: 119-hres-209
- Congress: 119
- Title: Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".
- Status: introduced
- Introduced: 2025-03-10
- Sponsor: Rep. Tonko, Paul [D-NY-20] (D-NY)
- Cosponsors: 14
- Policy area: Health
- Touches household money: no
- Last recorded action: 2026-04-21

## 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.

## Cosponsors (14)

- Rep. Bilirakis, Gus M. [R-FL-12] (R-FL), 2025-03-10T00:00:00.000Z
- Rep. Matsui, Doris O. [D-CA-7] (D-CA), 2025-03-10T00:00:00.000Z
- Rep. Norman, Ralph [R-SC-5] (R-SC), 2025-03-10T00:00:00.000Z
- Rep. Trahan, Lori [D-MA-3] (D-MA), 2025-03-10T00:00:00.000Z
- Rep. Wilson, Joe [R-SC-2] (R-SC), 2025-03-10T00:00:00.000Z
- Rep. Auchincloss, Jake [D-MA-4] (D-MA), 2025-03-10T00:00:00.000Z
- Rep. McGarvey, Morgan [D-KY-3] (D-KY), 2025-03-18T00:00:00.000Z
- Rep. Davids, Sharice [D-KS-3] (D-KS), 2025-03-18T00:00:00.000Z
- Rep. Biggs, Sheri [R-SC-3] (R-SC), 2025-03-18T00:00:00.000Z
- Rep. McGuire, John J. [R-VA-5] (R-VA), 2025-03-31T00:00:00.000Z
- Rep. Flood, Mike [R-NE-1] (R-NE), 2025-04-01T00:00:00.000Z
- Rep. Latimer, George [D-NY-16] (D-NY), 2025-04-02T00:00:00.000Z
- Rep. Guest, Michael [R-MS-3] (R-MS), 2025-04-08T00:00:00.000Z
- Rep. Neguse, Joe [D-CO-2] (D-CO), 2025-09-16T00:00:00.000Z

## Related bills

- 119-hr-3514: Improving Seniors’ Timely Access to Care Act of 2025
- 119-hr-979: AM Radio for Every Vehicle Act of 2025
- 119-hr-1993: 25th Anniversary of 9/11 Commemorative Coin Act
- 119-hr-842: Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage Act
- 119-hr-1262: Mikaela Naylon Give Kids a Chance Act
- 119-hr-2048: Metastatic Breast Cancer Access to Care Act

## Sources
- [119-hres-209 on Congress.gov](https://www.congress.gov/bill/119th-congress/house-resolution/209)

## Related
- [119-hr-3514: Improving Seniors’ Timely Access to Care Act of 2025](https://policyrisk.com/legislation/119-hr-3514)
- [119-hr-979: AM Radio for Every Vehicle Act of 2025](https://policyrisk.com/legislation/119-hr-979)
- [119-hr-1993: 25th Anniversary of 9/11 Commemorative Coin Act](https://policyrisk.com/legislation/119-hr-1993)
- [119-hr-842: Nancy Gardner Sewell Medicare Multi-Cancer Early Detection Screening Coverage A…](https://policyrisk.com/legislation/119-hr-842)
- [119-hr-1262: Mikaela Naylon Give Kids a Chance Act](https://policyrisk.com/legislation/119-hr-1262)
- [119-hr-2048: Metastatic Breast Cancer Access to Care Act](https://policyrisk.com/legislation/119-hr-2048)
- [All bills in Congress](https://policyrisk.com/legislation)

Source: PRIA, https://policyrisk.com/legislation/119-hres-209 (as of 2026-04-21).