Bill > A08243

This bill establishes a state Frontotemporal Degeneration (FTD) Advisory Committee to help improve understanding and support for individuals affected by this neurodegenerative disorder. The committee will be composed of 11 members appointed by various state leaders, including medical professionals, a patient with FTD, a caregiver, researchers, and a representative from an FTD awareness organization. The committee's primary responsibilities include recommending long-term objectives, goals, and priorities to the state department of health, and providing advice on planning and developing services for FTD patients. The committee will review and analyze critical data such as clinical diagnosis rates, patient demographics, treatment advancements, care resource availability, and misdiagnosis frequencies. Starting in January 2027, the committee will collaborate with the state health department to produce an annual report to the legislature and governor, which will comprehensively detail FTD diagnoses, resources, treatment progress, and patient care information. This report will be publicly available on the department's website and the state's FTD registry website. Committee members will serve without compensation but can be reimbursed for necessary expenses related to their duties.

Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/A8243