Res 0631-2026

Res. No. 631 Resolution declaring the last day in February as Rare Disease Day in New York City. By Council Member Morano Whereas, A rare disease is defined by the Rare Diseases Act of 2002 as a disease or condition that affects fewer than 200,000 individuals in the United States; and Whereas, The National Institutes of Health reports that there are more than 10,000 known rare diseases, the majority of which pose serious health risks and threaten lives; and Whereas, The New York State Department of Health estimated in 2024 that 1 in 10 people in the state of New York, or 1.8 million people, have a rare disease; and Whereas, The Lurie Children’s Hospital reports that almost half of Americans with a rare disease are children; and Whereas, Patients with rare diseases frequently experience delayed diagnosis, provider shortages, limited treatment options, insurance challenges, and lack of public awareness; and Whereas, Limited public awareness of rare diseases can contribute to gaps in healthcare education, patient advocacy, research, and information, as well as delays and inaccuracies in diagnosis; and Whereas, Fewer than five percent of rare diseases have treatments, according to the National Institutes of Health; and Whereas, New Yorkers who advocate for awareness of rare diseases, such as Alexandria Fiorenza Vale, have brought greater attention to the resilience and determination of those who face such diseases; and Whereas, The Prader-Willi Syndrome Association of the United States describes the designation of Rare Disease Day as “a platform to highlight the need for more research, better healthcare access, and improved policies that support rare disease communities”; and Whereas, Designating Rare Disease Day would increase awareness of the challenges faced by people living with rare diseases while recognizing their resilience and accomplishments; and Whereas, February 28, or February 29 in leap years, is already recognized internationally as Rare Disease Day by the European Organisation for Rare Diseases, in partnership with over 70 international patient advocacy organizations; and Whereas, Rare Disease Day is now observed in over 100 countries; and Whereas, The New York State Department of Health recognized Rare Disease Day on February 28, 2025 in order to “bring widespread recognition of rare diseases as a global health challenge”; and Whereas, The designation of the last day of February as Rare Disease Day holds meaning, as February 29 is the rarest date, only occurring every four years; now, therefore, be it Resolved, That the Council of the City of New York declares the last day in February as Rare Disease Day in New York City. AF LS# 25750 8/27/2026