H.Res. 1060 is a symbolic resolution expressing Congress's support for designating April 5, 2026, as "Barth Syndrome Awareness Day." Barth syndrome is a rare, life-threatening genetic disorder that affects fewer than 160 people in the United States, primarily males, and causes abnormalities in heart and skeletal muscle along with weakened immune function. The resolution highlights that the disease can be fatal in childhood, with no FDA-approved treatments available for children under 30 kilograms, and emphasizes the critical need for research and better access to specialized care. The resolution does not establish new funding or programs but rather calls attention to the disease and supports the efforts of the Barth Syndrome Foundation to increase public awareness and advance treatment development. The measure is co-sponsored by bipartisan members of Congress and recognizes the importance of improving diagnosis, research, and regulatory pathways for treating this ultrarare disease.
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