Bill > SR0145

This resolution declares March 5, 2025 as Rare Disease Day in Illinois to address 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 50% of those affected being children, and notes that while some rare diseases like muscular dystrophy are well-known, many others lack public awareness and research funding. It emphasizes that despite the U.S. Food and Drug Administration approving drugs for over 1,000 rare disease indications, millions of Americans still lack approved treatments, and patients often struggle with delayed diagnoses, difficulty finding medical experts, and limited access to services. The resolution aims to raise awareness, support affected individuals and families, promote research and funding for potential therapies, and recognize the work of the Illinois Rare Disease Commission, while also acknowledging the state's significant role in rare disease research through its leading academic institutions and biotechnology companies.

https://www.ilga.gov/legislation/BillStatus.asp?DocNum=145&GAID=18&DocTypeID=SR&SessionID=114&GA=104