Bill S.1287b / A.1296b from Senator Roxanne Persaud (19/D) & Assemblywoman Amy Paulin (88/D), passed the full NY Senate unanimously in 2025, and made it as far as the Assembly Ways & Committee before the legislature recessed. In 2026 the bill has returned for consideration, and rare disease advocates will be there to push again for passage!  

Efforts to pass the bill are being led by a coalition consisting of the National Organization of Rare Disorders and  members of several New York state rare disease groups. To mark rare disease day 2026, members of the NYS rare disease community will join NORD for an advocacy day in Albany on Tuesday 2/24 to push for passage of the RDAC bill. NY is part of the NORD campaign to establish RDACs in all 50 states, with 32 states adopting a council co far. Read the NORD sign on support memo.

The bill will create a permanent rare disease advisory council under the Dept. of Health to study the needs of people with rare diseases and provide ongoing recommendation for addressing those needs. The RDAC will build on the Department of Health Rare Disease Work Group report issued on  12/24. Among the report recommendations are establishment of a permanent council to focus on rare disease needs. When established, the RDAC  will include patients, healthcare providers, pharma,  researchers, and health plans. Read the bill and get updates on it's progress.

The bill has until mid June to pass before the Legislature goes on recess.

Click here to support the NYS RDAC bill! 

S.965 (Hoylman-Sigal) / A.2384a (Eichenstein): 

This bill, from Assemblyman Eichenstein (48/D) and Senator Hoylman-Sigal (47/D), will help children with rare and other serious medical conditions get care by making it easier for their families to seek treatment from out-of-network specialists.

Under A.2384a/S.965, health plans* would cover visits to out of network specialists for children with rare, life-threatening, degenerative/disabling condition or medically fragile, under certain conditions:

• The child’s primary doctor writes a letter of need

• The chosen specialist notifies the health plan on advance

• The chosen specialist is certified as a specialist in that area

• The chosen specialist accepts the health plan’s normal rate for specialist care

• The health plan does not have to cover travel for out of area specialists

*Self-insured health plans are not covered because of the federal ERISA exemption. 

Access to out-of-network specialists can be life altering for children with rare diseases. On average it takes 5-7 years for a child with a rare disease to receive a diagnosis. In that time the child’s disease can progress, leading to worsening symptoms, and the need for more, often expensive care. In the most serious cases the delay of treatment can lead to permanent disability or even be fatal.

The bill represents a compromise in that health plans would only be required to pay their normal rates, while families have a greater chance to see urgently needed specialists. With more than 10,000 identified rare diseases afflicting people, families with affected children already struggle to find proper care. A.2384a/S.965 helps to make the search for that care a little easier while keeping costs to the health plans in check.

Read a full report on the bill here.

S.2398 (Persaud)  Requires genetic testing results only be received by patients and health care providers providing direct care while health insurance companies only receive a record that the genetic testing was performed. Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/S2398 

A.183 (Rosenthal) / S.3029 (Stavisky): bill creates process to license Genetic Counselors and create a state board for genetic counselors (currently NYS does not license them). The bill currently sits in the Higher Education committees. Read the bill and get progress updates: https://www.nysenate.gov/legislation/bills/2025/A183 

S.1633 (Fernandez) / A.2613 (Lunsford): Provides protections for sensitive health information and requires health info networks, systems, and providers to provide patients a right to restrict disclosures of info.  Read the bill and get progress updates https://www.nysenate.gov/legislation/bills/2025/S1633 

• The Governor's office begins collecting budget requests from staff and state agencies - October
• Governor proposes a budget to the Senate & Assembly Legislature - January 
• The Senate & Assembly reply with their analysis of the proposed budget, called the "Blue Book" (Senate) and the "Yellow Book" (Assembly) - late January
• The Legislature holds joint public hearings on the budget - late January through February
• The Governor offers changes to the budget proposal based on legislative and public feedback; called "the 30-day amendments" - late February
• The Legislature offers their budget counter-proposals; called "one-house budget bills" - early March
• Legislators negotiate with the Governor's office on a final budget - through March
• Final budget agreement approved by the Governor & Legislature - April 1st or possibly later

Read about the full budget process