Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".
- Bill Number
- H.Res. 1060
- Origin Chamber
- House
- Congress
- 119th Congress, Session 2
- Policy Area
- Health
- Status
- Introduced
- Latest Action
- 2026-02-11: Referred to the House Committee on Energy and Commerce.
- Last Updated
- 2026-03-20T08:06:40Z
AI-Generated Summary
Purpose
This House Resolution (H. Res. 1060) expresses the U.S. House of Representatives' support for designating April 5, 2026, as "Barth Syndrome Awareness Day." The goal is to raise public awareness about Barth syndrome, a rare genetic disorder, and highlight the need for better diagnosis, research, and treatments.
Key Provisions
- Description of Barth Syndrome: The resolution outlines that Barth syndrome is a life-threatening genetic disorder mainly affecting males, caused by a mutation in the tafazzin gene, leading to issues in phospholipid metabolism. It impacts heart and skeletal muscles, reduces neutrophils (white blood cells that fight infections), and causes growth delays.
- Rarity and Prevalence: It notes the disorder's low incidence (about 1 in 300,000 to 400,000 male births in the U.S.), with fewer than 160 diagnosed cases in the U.S. and around 300 globally. It can be fatal in early childhood, with high mortality rates in the first few years of life.
- Challenges Faced: Patients often struggle with delayed diagnosis, limited treatment options, and access to specialized care. There is no FDA-approved treatment for children under 30kg, and care requires experts from multiple medical fields. The Barth Syndrome Clinic at Kennedy Krieger Institute is the only dedicated U.S. facility.
- Support for Awareness and Action: The House supports the Awareness Day and recognizes the importance of:
- Improving public awareness.
- Promoting accurate and early diagnosis.
- Advancing research and developing new treatments, diagnostics, and cures.
- Identifying regulatory pathways for drugs targeting ultra-rare diseases like Barth syndrome.
- Role of Organizations: It acknowledges the Barth Syndrome Foundation's efforts since 2000 in education, collaboration, and advocacy, as well as the benefits of laws like the Orphan Drug Act and the FDA's Patient-Focused Drug Development program for rare diseases.
Significant Changes to Existing Law
This is a non-binding resolution and introduces no changes to existing laws. It does not amend statutes, allocate funds, or mandate actions; it serves as a symbolic expression of support.
Potential Impacts
- On Citizens: May increase public knowledge of Barth syndrome, encouraging early diagnosis and support for affected families, potentially leading to better access to care and reduced isolation for patients and caregivers.
- On Government Agencies: Could indirectly influence the FDA and health agencies by emphasizing the need for research and regulatory flexibility for rare diseases, though no direct mandates or funding are provided.
- On International Relations: Minimal impact, as the resolution focuses on U.S.-based awareness, but it may align with global efforts to address rare genetic disorders.
- Overall, the effects are primarily educational and advocacy-oriented, fostering hope and collaboration without enforceable outcomes.
Main Stakeholders Affected
- Patients and Families: Primarily males with Barth syndrome and their caregivers, who face diagnosis delays, treatment limitations, and high mortality risks.
- Medical Community: Doctors, specialists (e.g., in cardiology, immunology), and institutions like the Barth Syndrome Clinic and Kennedy Krieger Institute, which provide specialized care.
- Advocacy Groups: The Barth Syndrome Foundation, which leads awareness efforts and research collaboration.
- Researchers and Regulators: Scientists developing treatments and the FDA, benefiting from calls for accelerated drug pathways under existing rare disease programs.
- General Public: Through heightened awareness, potentially leading to broader support for rare disease initiatives.
Notable Legal, Constitutional, or Political Implications
- Legal: None significant, as resolutions like this are symbolic and do not create enforceable rights or obligations. It references existing frameworks (e.g., Orphan Drug Act) without altering them.
- Constitutional: No implications, as it aligns with Congress's role in expressing policy support without infringing on individual rights or federal powers.
- Political: Demonstrates bipartisan congressional interest (introduced by members from both parties) in rare disease advocacy, potentially signaling future support for funding or legislation in health policy. It promotes patient-centered approaches in drug development, reinforcing FDA initiatives without controversy.
This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.
Sponsor
Cosponsors (11)
Rep. Bilirakis, Gus M. [R-FL-12], Rep. Matsui, Doris O. [D-CA-7], Rep. Norman, Ralph [R-SC-5], Rep. Trahan, Lori [D-MA-3], Rep. Auchincloss, Jake [D-MA-4], Rep. McGarvey, Morgan [D-KY-3], Rep. Davids, Sharice [D-KS-3], Rep. Wilson, Joe [R-SC-2], Rep. Biggs, Sheri [R-SC-3], Rep. Latimer, George [D-NY-16], Rep. Foushee, Valerie P. [D-NC-4]
Recent Actions
- 2026-02-11: Referred to the House Committee on Energy and Commerce.
- 2026-02-11: Submitted in House
- 2026-02-11: Submitted in House
Bill Versions
- Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day". — issued 2026-02-11 — PDF (4 pages)