NY J01336

Requests Governor Kathy Hochul to proclaim February 28, 2026, as Rare Disease Day in New York State, coinciding with National Rare Disease Day observance

Highlights that approximately 1 in 10 New Yorkers suffer from a rare disease, with nearly 10,000 conditions considered rare and more than 95% lacking FDA-approved treatments

Notes that patients typically wait 6-8 years on average to receive an accurate diagnosis for rare diseases, with about half of those affected being children

References the 2020 Rare Disease Advisory Work Group legislation and its September 2023 final report, as well as 2024 legislation to establish a permanent rare disease advisory council

Cites nearly 800 medicines currently in development for rare diseases, including treatments for rare cancers, genetic disorders, neurological conditions, and blood disorders like sickle cell disease