Expressing support for the designation of April 5, 2026, as "Barth Syndrome Awareness Day".

This resolution expresses support for designating April 5, 2026, as "Barth Syndrome Awareness Day" to raise public understanding of this rare and life-threatening genetic disorder. Barth syndrome primarily affects males, causing abnormalities in heart and skeletal muscle, low white blood cell counts, and growth delays. This multisystem disorder often leads to severe health complications, with a high mortality rate in early childhood and a significantly limited life expectancy for those who survive to adulthood. The resolution highlights the critical challenges faced by individuals with Barth syndrome, including difficulties in obtaining accurate diagnoses, limited treatment options, and a scarcity of expert medical care. It underscores the importance of improving awareness, encouraging early diagnosis, and advancing research to develop new treatments, diagnostics, and cures for this ultrarare disease. The resolution also recognizes the efforts of organizations like the Barth Syndrome Foundation in educating, advancing treatments, and finding a cure for Barth syndrome.