Bill > K00108

This resolution memorializes Governor Kathy Hochul to proclaim February 28, 2025, as Rare Disease Day in New York State, highlighting the significant challenges faced by individuals with rare diseases. The resolution emphasizes that nearly 10,000 rare diseases exist, with over 95% lacking FDA-approved treatments, and approximately half of those affected being children. It traces the history of Rare Disease Day, which began in 2008 and is observed on the last day of February, and underscores the importance of raising awareness about these conditions. The resolution notes that patients with rare diseases often experience long diagnostic delays (six to eight years on average) and face difficulties accessing specialized treatment. It also highlights positive developments, including advances in DNA sequencing, gene-editing techniques, and ongoing research that offers hope for potential treatments in various fields such as blood disorders, cancer, and genetic conditions. Additionally, the resolution acknowledges the New York State Rare Disease Alliance and recent legislative efforts to support rare disease research and patient care, ultimately calling for greater public awareness and support for individuals and families affected by these challenging medical conditions.

https://www.nysenate.gov/legislation/bills/2025/K108