Bill 118 HRES 1025, also known as the "Barth Syndrome Awareness Day" bill, is a piece of legislation that aims to designate April 5, 2024, as a day to raise awareness about Barth Syndrome. Barth Syndrome is a rare genetic disorder that primarily affects males and is characterized by muscle weakness, heart problems, and low levels of certain types of white blood cells.
The bill expresses support for increasing awareness about Barth Syndrome and the challenges faced by individuals and families affected by this condition. By designating April 5th as "Barth Syndrome Awareness Day," the bill seeks to educate the public about the impact of this disorder and promote research efforts to find effective treatments and ultimately a cure.
The legislation is non-partisan and has garnered bipartisan support in Congress. It highlights the importance of raising awareness about rare diseases like Barth Syndrome and the need for continued support for individuals and families affected by these conditions.
Overall, Bill 118 HRES 1025 is a significant step towards increasing awareness and understanding of Barth Syndrome, and it underscores the importance of supporting individuals with rare genetic disorders.