Assemblyman John Mikulin (R,C-Bethpage) yesterday hosted a press conference at the State Capitol to mark the Assembly’s recognition of Rare Disease Day and to highlight critical legislation aimed at improving care for the nearly 1.8 million New Yorkers living with rare diseases.

Joined by colleagues and advocates, including the Norton family, founders of Madeline’s Mission, Mikulin emphasized the urgent need for stronger coordination, awareness and support for patients and families navigating rare diseases.

Rare diseases affect a huge number of New Yorkers, yet many patients face years-long delays in diagnosis and limited treatment options. More than 95% of rare diseases lack FDA-approved treatments, underscoring the need for targeted action.

“Too many families are left searching for answers and support,” Mikulin said. “This legislation is about bringing experts, patients and policymakers together to improve care, expand access and ensure these diseases are no longer overlooked.”

The Assembly formally recognized Feb. 28, 2026, as Rare Disease Day and highlighted Bill A.1296-B, which would establish a Rare Disease Advisory Council within the Department of Health. The council would include medical professionals, researchers, patients and caregivers tasked with identifying best practices, addressing gaps in care and providing recommendations to the governor and Legislature.

During the event, the Norton family shared their daughter’s story and their ongoing work to raise awareness for PKAN, a rare and devastating neurological disorder. Their remarks underscored the real-life impact of rare diseases and the need for lasting, statewide solutions.

The Senate has already passed the legislation, and the Assembly recently followed. Lawmakers are now urging the governor to sign the bill into law to strengthen support systems, improve access to care and advance research for rare disease patients across New York.