Bill 118 HRES 1307, also known as the "World FSHD Day" bill, is a piece of legislation that expresses support for the designation of June 20, 2024, as "World FSHD Day." FSHD, or Facioscapulohumeral Muscular Dystrophy, is a rare genetic muscle disorder that affects an estimated 1 in 8,333 individuals worldwide.
The bill recognizes the importance of raising awareness about FSHD and the impact it has on individuals and families. By designating June 20, 2024, as "World FSHD Day," the bill aims to bring attention to the challenges faced by those living with FSHD and to promote research and advancements in treatment options.
The legislation is non-partisan and seeks to unite members of Congress in support of individuals affected by FSHD. By officially recognizing "World FSHD Day," the bill highlights the need for continued efforts to improve the lives of those living with this rare genetic disorder.
Overall, Bill 118 HRES 1307 is a positive step towards raising awareness and support for individuals affected by FSHD, and emphasizes the importance of continued research and advocacy in the fight against rare genetic disorders.