Expressing support for the designation of May 15, 2023, as "Prader-Willi Syndrome Awareness Day" to raise awareness of and promote research on the disorder.
Impact
HR404 aims to create a national platform for educating the public and advocating for those affected by PWS, emphasizing the importance of early diagnosis and intervention. Recognizing 'Prader-Willi Syndrome Awareness Day' is a symbolic act that can lead to increased funding for research and better support services for families. Moreover, the resolution acknowledges the vital role of organizations, such as the Prader-Willi Syndrome Association, in supporting advocacy and care efforts.
Summary
House Resolution 404 expresses support for the designation of May 15, 2023, as 'Prader-Willi Syndrome Awareness Day.' This resolution aims to raise awareness and promote research on Prader-Willi Syndrome (PWS), a rare genetic disorder characterized by insatiable appetite and severe obesity, affecting approximately 10,000 to 20,000 individuals in the United States. The resolution highlights the need for greater awareness, research, and effective treatment options for individuals suffering from PWS and also acknowledges the challenges associated with obtaining a diagnosis and accessing care.
Contention
While the resolution itself is largely celebratory, it raises important discussions about the sufficiency of current resources and services for individuals with PWS. Stakeholders may debate the effectiveness of awareness days in leading to tangible improvements in healthcare outcomes for those with rare genetic disorders. There may also be discussions surrounding the funding of research initiatives that could provide new treatments or therapies for the condition, given that no known cure exists for PWS.
Expressing support for the designation of May 15, 2025, as "Prader-Willi Syndrome Awareness Day" to raise awareness of and promote research on the disorder.
Recognizing the seriousness of polycystic ovary syndrome (PCOS) and expressing support for the designation of the month of September 2023 as "PCOS Awareness Month".