IL HR0153

Declares March 5, 2025 as Rare Disease Day in Illinois to raise awareness and support individuals and families affected by rare diseases

Nearly 7,000 diseases affecting fewer than 200,000 Americans each are classified as rare, collectively impacting approximately 30 million Americans, with 50% being children

The FDA has approved treatments for over 1,000 rare disease indications, but millions of Americans with rare diseases still have no approved treatment options

Illinois established the Rare Disease Advisory Commission in 2017 to give voice to affected residents in the state

Copies of the resolution will be presented to the Illinois Biotechnology Innovation Organization, the Illinois Rare Disease Commission Chairperson Maria Pollock, and the Department of Public Health