Bill 119 HRES 209, also known as the "Barth Syndrome Awareness Day" bill, is a piece of legislation that aims to designate April 5, 2025, 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 fats in the blood.
The bill expresses support for the designation of April 5, 2025, 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. The goal of the bill is to bring attention to the challenges faced by individuals and families affected by Barth Syndrome and to promote greater understanding and support for those living with the disorder.
By designating April 5, 2025, as Barth Syndrome Awareness Day, the bill aims to raise awareness, promote research, and ultimately improve the lives of those affected by this rare genetic disorder. It is a bipartisan effort to support individuals and families impacted by Barth Syndrome and to advocate for greater resources and support for research and treatment.