Bill > HR0153

This resolution officially designates March 5, 2025 as Rare Disease Day in Illinois, acknowledging the significant challenges faced by individuals and families affected by rare diseases. The resolution highlights that nearly 7,000 rare diseases impact approximately 30 million Americans, with half of those affected being children, and recognizes that many of these conditions are serious and debilitating. It emphasizes that while some rare diseases like muscular dystrophy are well-known, many patients struggle with diagnosis delays, difficulty finding medical experts, and limited treatment options. The resolution aims to raise awareness about rare diseases, support affected individuals and families, and draw attention to the critical need for research and funding to develop potential treatments and cures. By referencing the Orphan Drug Act and acknowledging Illinois's role in medical research, the resolution also underscores the state's commitment to addressing rare disease challenges and supports the continued work of the Illinois Rare Disease Commission.

Health and Social Services

https://www.ilga.gov/legislation/BillStatus.asp?DocNum=153&GAID=18&DocTypeID=HR&SessionID=114&GA=104