Bill > HRes1060

This resolution expresses support for designating April 5, 2026, as "Barth Syndrome Awareness Day" to raise public awareness and generate support for Barth syndrome, a rare, life-threatening genetic disorder primarily affecting males. Barth syndrome is caused by a mutation in the tafazzin gene, leading to an inborn error in phospholipid metabolism that impacts multiple body systems, including the heart and skeletal muscles, and causes low levels of neutrophils, which are white blood cells crucial for fighting bacterial infections, as well as growth delays. The resolution acknowledges the challenges faced by individuals with Barth syndrome, such as difficulties in diagnosis, limited treatment options, and the need for specialized care, noting that there is currently no FDA-approved treatment for children under 30kg and a critical need for research and development. It also recognizes the efforts of organizations like the Barth Syndrome Foundation in advancing treatments and finding a cure, and highlights the importance of incorporating patient perspectives in the drug development process, especially for ultrarare diseases.