Expressing support for the designation of April 5, 2025, as "Barth Syndrome Awareness Day".

This is a non-binding House Resolution (H. Res. 209) expressing support for officially designating April 5, 2025, as Barth Syndrome Awareness Day. The resolution provides background on Barth syndrome—a rare, genetic, multisystem disorder caused by a mutation in the TAFAZZIN gene, primarily affecting males—and highlights the challenges faced by patients and families, including late or difficult diagnosis, limited treatment options, and the scarcity of specialized care. It notes that there is no FDA-approved treatment, references existing research and policy mechanisms that support rare and ultrarare diseases, and recognizes the Barth Syndrome Foundation and the Kennedy Krieger Institute’s Barth Syndrome Clinic as key organizations in awareness, care, and advocacy. By designating a day of awareness, the measure aims to improve public understanding, support early diagnosis, advance research, and identify regulatory pathways for drug development for Barth syndrome. As a symbolic, non-binding resolution, it does not create new laws, funding, or regulatory requirements. Instead, it signals congressional support for raising awareness and supporting efforts to improve diagnosis, treatment development, and patient access to expert care.