Congress is looking to name April 5, 2026, as a day to raise awareness for Barth syndrome. This is a rare and life-threatening genetic condition that mostly affects boys and can lead to heart failure or severe infections.
The resolution aims to help doctors and families recognize the disease sooner. Currently, there are fewer than 160 people in the U.S. diagnosed with the condition, and about 85 percent of those who pass away from it do so before they turn five years old.
By creating this awareness day, supporters hope to encourage more medical research and the development of new treatments. Right now, there is only one specialized clinic in the country for this disease, and there are no government-approved medicines for young children who have it.
Milestones
1 milestone2 actions
Feb 11, 2026House
Referred to the House Committee on Energy and Commerce.
Feb 11, 2026
Submitted in House
Source Information
Document Type
Congressional Bill
Official Title
Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".
Bill NumberHRES 1060
Congress119th Congress
ChamberHouse of Representatives
Latest ActionReferred to the House Committee on Energy and Commerce.
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