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.
H. Res. 253 is a non-binding House of Representatives resolution introduced on March 25, 2025. It expresses support for designating May 15, 2025 as “Prader-Willi Syndrome Awareness Day” to raise awareness of the disorder and promote research toward better understanding, treatments, and potential cures. The resolution outlines the key characteristics and impacts of Prader-Willi syndrome (PWS), emphasizes the importance of early diagnosis, ongoing research, and access to expert care, and honors the work of parents, families, researchers, healthcare professionals, and advocacy organizations involved with PWS. As a symbolic, non-spending measure, the resolution does not create new laws or funding. Its purpose is to recognize the importance of PWS awareness and research and to encourage public education and advocacy.
Key Points
- 1Expresses support for designating May 15, 2025 as “Prader-Willi Syndrome Awareness Day.”
- 2Applauds advocates, organizations, and professionals who promote awareness, fund research, and provide education, support, and hope to those affected by PWS.
- 3Recognizes the commitment of parents, families, researchers, health professionals, and others in pursuing effective treatments and an eventual cure for PWS.
- 4Emphasizes the importance of improving public awareness, accurate and early diagnosis, advancing research, developing new treatments and diagnostics, and identifying regulatory pathways for drug development for rare diseases like PWS.
- 5Provides background on PWS, including its genetic basis, prevalence (about 1 in 15,000 births), its major health impacts (notably obesity, cognitive and behavioral challenges, and higher morbidity/mortality), and the current state of treatment and diagnosis.