NY K00938

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

Approximately 1 in 10 New Yorkers suffer from a rare disease, with 25-30 million Americans affected nationally, and nearly half of those affected are children due to the genetic nature of many rare diseases

Nearly 10,000 diseases are considered rare, with more than 95% lacking FDA-approved treatments, and patients typically wait 6-8 years on average to receive an accurate diagnosis

Close to 800 medicines are currently in development for rare diseases, including treatments for rare cancers, genetic disorders like cystic fibrosis, neurological conditions like ALS, and blood disorders like sickle cell disease

References New York's 2020 Rare Disease Advisory Work Group legislation and 2024 legislation proposing a permanent rare disease advisory council to improve awareness and evaluate barriers to care