A 1296 New York Assembly · 2025 Regular Session

Establishes the rare disease advisory council

Summary

Establishes the rare disease advisory council to identify best practices, raise awareness regarding rare diseases, evaluate barriers to access to care, and to make recommendations to the legislature and the governor.

Issues: ✓ Healthcare

Bill status in committee 1 of 4 stages cleared

Introduction

Jan 2025

Committee Review

Floor Vote

Governor

Introduced Jan 9, 2025 Last action Mar 10, 2026

Maddy AI version diff · 2 comparisons

What changed between versions

A1296A → A1296B · 4 edits

MODERATE

This bill version adds nine new sponsors to the legislation and expands the Rare Disease Advisory Council membership from 15 to 17 members. The changes include adding appointments for the Assembly Minority Leader and Senate Minority Leader, while removing the requirement for the Superintendent of Financial Services to be a member. These modifications increase representation from minority leadership positions and reduce the role of the financial services department in the council.

Scope change

The bill's scope expanded to include additional legislative sponsors and modified the composition requirements of the advisory council to include minority leadership appointments while removing the financial services representative position.

ELIGIBILITY

Added nine new sponsors to the bill including McDONALD, OTIS, WEPRIN, PIROZZOLO, NORBER, NOVAKHOV, CHANG, ALVAREZ, DINOWITZ, DILAN, ROSENTHAL, WIEDER, MANKTELOW, MORINELLO, ANGELINO, KASSAY, COLTON, LEMONDES, and GRIFFIN and SEMPOLINSKI.

REQUIREMENT

Changed council membership from 15 to 17 members by adding appointments for the Assembly Minority Leader and Senate Minority Leader.

Removed the requirement for the Superintendent of Financial Services or their designee to serve on the council.

TECHNICAL

Updated bill tracking numbers from A1296A to A1296B and changed page reference from LBD02189-03-5 to LBD02189-05-5.

Floor votes

How they voted

No floor votes recorded yet.

Full legislative history

Actions timeline

Total actions

Key actions

Committee

Amendments

Jan 12, 2026

Lower · Passed

AMENDED ON THIRD READING 1296B

lower

May 27, 2025

Committee

REPORTED REFERRED TO RULES

lower

Feb 4, 2025

Committee

REPORTED REFERRED TO WAYS AND MEANS

lower

Jan 29, 2025

Lower · Passed

PRINT NUMBER 1296A

lower

Jan 29, 2025

Lower · Passed

AMEND AND RECOMMIT TO HEALTH

lower

Jan 9, 2025

Committee

REFERRED TO HEALTH

lower

1 primary · 27 co-sponsors