Bill > S07431

This bill establishes a state frontotemporal degeneration (FTD) advisory committee within the New York State Department of Health to address the needs of individuals affected by this neurodegenerative disorder. The committee will consist of 11 members selected by the governor, legislature, and commissioner, including medical professionals, researchers, a patient with FTD, a caregiver, and other relevant stakeholders. The committee's primary responsibilities include recommending long-term objectives and priorities, and providing advice on planning and developing services for FTD patients. Specifically, the committee will review and analyze data such as clinical diagnosis rates, patient demographics, treatment advancements, care resource availability, and misdiagnosis frequencies. Beginning in January 2027, the committee will produce an annual report to the legislature and governor, which will be published on the department's website and include comprehensive information about FTD diagnoses, treatments, resources, and patient experiences. Committee members will serve without compensation but will be reimbursed for necessary expenses. The bill aims to improve understanding, diagnosis, and support for individuals and families affected by frontotemporal degeneration in New York State.

Health and Social Services

https://www.nysenate.gov/legislation/bills/2025/S7431