What it is
- What changed
- New York signed Chapter 478 of 2025 requiring DOH to establish an ALS and motor neuron disease registry with provider reporting, patient notice, opt-out process, confidentiality rules, and a public website deadline.
- Why it matters
- ALS families face fast-moving care needs; better incidence and prevalence data can affect state service planning and research pathways without changing benefits by itself.
- Who it touches
- Family caregivers, Care providers and plans, People receiving care, Businesses and agencies that must complypeople with ALS, ALS caregivers, neurologists, researchers
- What it does
- Plans, studies, registries or guidance
- Identifiers
- S 6413 (session 2025)
Sources
Last reviewed Jun 18, 2026. This is information, not legal advice; check the source for the current text.