IL HR0653

Designates March 6, 2024 as Rare Disease Day in Illinois to raise awareness of rare diseases affecting nearly 30 million Americans.

Acknowledges that nearly 7,000 rare diseases affect fewer than 200,000 Americans each, with 50% of affected individuals being children.

Notes that millions of Americans with rare diseases lack approved treatments and face challenges including delayed diagnosis, difficulty finding medical experts, and limited access to care.

Recognizes Illinois's role as a hub for rare disease research through leading academic institutions, biotech companies, and pharmaceutical companies conducting research and seeking cures.

Supports the Illinois Rare Disease Advisory Commission established in 2017 and emphasizes the need for continued research funding and development of therapies for rare diseases.