Assemblyman John Mikulin hosted a press conference at the State Capitol on Mar. 19 to recognize Rare Disease Day and bring attention to legislation designed to improve care for nearly 1.8 million New Yorkers affected by rare diseases.
The event underscored the challenges faced by patients and families dealing with rare diseases, which often include long delays in diagnosis and limited treatment options. More than 95% of rare diseases do not have FDA-approved treatments, highlighting the need for new measures.
“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.”
During the press conference, Mikulin was joined by advocates such as the Norton family—founders of Madeline’s Mission—who shared their experiences with PKAN, a severe neurological disorder. The Assembly formally recognized Feb. 28 as Rare Disease Day and discussed Bill A.1296-B, which proposes creating a Rare Disease Advisory Council within the Department of Health made up of medical professionals, researchers, patients, and caregivers.
The Senate has already passed this bill; the Assembly followed recently. Lawmakers now call on the governor to sign it into law so that recommendations can be provided directly to state leadership in order to strengthen support systems across New York.
Mikulin serves as assemblymember for a district located entirely in Nassau County according to the official website. He is affiliated with community organizations such as St. James Roman Catholic Church and Levittown Property Association according to his official biography. His policy priorities include lowering taxes, addressing opioid issues, supporting business-friendly policies according to official sources, as well as advocating reforms in education and economic development programs as reported by his office.
