Bill > HRes209

This resolution supports the designation of April 5, 2025, as "Barth Syndrome Awareness Day" to raise awareness about a rare, life-threatening genetic disorder that primarily affects males. The resolution highlights that Barth syndrome is caused by a mutation in the tafazzin gene, resulting in complex medical challenges including heart and muscle abnormalities, low white blood cell counts, and growth delays. With an extremely low incidence rate of approximately 1 in 300,000 to 400,000 births and fewer than 150 diagnosed cases in the United States, the syndrome is particularly devastating, with approximately 85 percent of affected individuals dying before their fifth birthday. The resolution emphasizes the critical need for increased research, early diagnosis, and treatment development, recognizing the Barth Syndrome Foundation's efforts to support patients and families. By supporting this awareness day, the House of Representatives aims to encourage improved medical understanding, research advancement, and potential regulatory pathways for developing treatments for this ultrarare genetic disorder.

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https://www.congress.gov/bill/119th-congress/house-resolution/209/all-info