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New York Seeks the “Select Experts” for Its Rare Disease Advisory Council: Rare Voices, Rare Seats
National Organization for Rare Disorders / X
Jul 7, 2025, 18:12

New York Seeks the “Select Experts” for Its Rare Disease Advisory Council: Rare Voices, Rare Seats

National Organization for Rare Disorders (NORD) recently shared an inviting post to Rare Disease Advisory Council on X:

”Join the New York State Rare Disease Advisory Council!

Are you a healthcare professional, researcher, caregiver, patient, or advocate passionate about Rare Diseases? New York State is establishing the Rare Disease Advisory Council to continue the important work launched by the Rare Disease Workgroup under Article 27-L of the Public Health Law (2021).

We’re looking for individuals from across New York to bring diverse perspectives and lived experiences to this effort. Help shape policies that support and elevate the voices of New Yorkers impacted by rare diseases.”

To submit your application, follow the link.

Calling all healthcare professionals, researchers, caregivers, and patients — if your connection to rare diseases puts you in that unique minority, New York wants you to join its newly formed Rare Disease Advisory Council.

Built on the foundations of Article 27-L of the Public Health Law, this council promises to elevate patient voices — assuming they can squeeze into policy meetings.

Applications now open for those ready to shape big decisions in small, infrequent doses!

New York Seeks the “Select Experts” for Its Rare Disease Advisory Council: Rare Voices, Rare Seats

To not miss opportunities in the field of your expertise, read Hemostasis Today, daily!

Headlines Health Hematology Hemostasis Today Medicine New York NORD Rare Disease Advisory Council Rare Diseases Rare Disorders
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