Bill > K00395

This resolution memorializes Governor Kathy Hochul to officially proclaim April 29, 2025, as Undiagnosed Rare Disease Day in New York State, an initiative originally started in 2016 by the Rare and Undiagnosed Network. The resolution aims to raise public awareness about the challenges faced by individuals with undiagnosed rare diseases, highlighting that approximately 25 million Americans (roughly 1 in 13 people) suffer from such conditions, with 80% having genetic origins. The resolution emphasizes the emotional, physical, and financial impacts on patients and their families, noting the unique difficulties of dealing with medical conditions that lack clear diagnoses, which can leave patients, parents, and caregivers feeling bewildered and without established advocacy resources. By recognizing this day, the legislative body seeks to celebrate those living with undiagnosed diseases, remember those who have been lost, and draw attention to the importance of genomics in understanding these complex medical conditions. The resolution also directs that copies be transmitted to Governor Hochul and the Rare and Undiagnosed Network.

https://www.nysenate.gov/legislation/bills/2025/K395