Us Congress House Bill HR1307

Us Congress 2023-2024 Regular Session

• Introduced: 6/18/24
• Refer: 6/18/24

Caption

Expressing support for the designation of June 20, 2024, as "World FSHD Day".

Impact

If passed, this resolution could enhance governmental and community recognition of FSHD, promoting initiatives that support those living with the condition. It seeks to mobilize support for scientific research aimed at finding effective treatments and increasing public and healthcare provider awareness of the disease. Importantly, the resolution stands to encourage better genetic testing practices which could lead to timely and accurate diagnoses, significantly impacting patient quality of life.

Summary

House Resolution 1307 expresses support for the designation of June 20, 2024, as 'World FSHD Day' to raise awareness about facioscapulohumeral muscular dystrophy (FSHD). FSHD is a genetic neuromuscular disease marked by progressive muscle weakness due to genetic factors, affecting approximately 1 in 8,000 individuals in the U.S. The resolution emphasizes the importance of education, early diagnosis, and the advancement of research for developing treatments and improving the lives of those affected by FSHD.

Contention

While the resolution is primarily supportive, it underscores the broader issue of limited treatment options for FSHD, as no drugs have yet been approved specifically for this disorder by the FDA. Critics may point out that while awareness is important, legislative efforts must also focus on ensuring adequate funding for research and facilitating access to genetic testing and treatments for affected individuals. This could highlight ongoing gaps in policy and support for rare diseases, encouraging a balance between raising awareness and driving actionable healthcare improvements.