Bill 118 HRES 276, also known as the "Barth Syndrome Awareness Day" bill, is a piece of legislation that aims to designate April 5, 2023, 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 growth delays.
The bill expresses support for the designation of April 5th as Barth Syndrome Awareness Day in order to educate the public about this little-known condition and to encourage research and funding for treatments and cures. By raising awareness about Barth Syndrome, the hope is to improve the lives of those affected by the disorder and to promote early detection and intervention.
The bill is non-partisan and has garnered bipartisan support in Congress. It highlights the importance of recognizing rare diseases like Barth Syndrome and the need for increased awareness and support for those living with these conditions. Overall, Bill 118 HRES 276 seeks to bring attention to Barth Syndrome and to advocate for better resources and care for individuals and families impacted by this rare genetic disorder.