NY A08243

Requires the Department of Health to establish a frontotemporal degeneration advisory committee within 90 days to recommend long-range objectives, goals, and priorities for planning and developing needed services

Committee must review diagnosis rates by county, registry data, patient demographics, treatment advancements, care resources and regional disparities, cost of care, and frequency/causes of misdiagnosis

Ten committee members appointed by the governor (2), senate president (2), assembly speaker (2), commissioner (2), and minority leaders (1 each), including medical professionals, researchers, a patient, a caregiver, and advocacy organization representative

Annual reports due to the legislature and governor starting January 1, 2027, covering disease incidence and prevalence by county, registry records, new diagnoses, treatment advancements, available resources, care costs, and misdiagnosis data

Committee members serve without compensation but receive reimbursement for actual and necessary expenses; reports must be published in downloadable format on department and registry websites