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!

To not miss opportunities in the field of your expertise, read Hemostasis Today, daily!
-
Feb 23, 2026, 14:45Stacey McGeown: Rare Disease Awareness Day at QUB Marks the Start of Rare Disease Month
-
Feb 23, 2026, 13:53Rare Diseases, Plasma-Derived Medicines and the Elephant in the Room – Part 1
-
Feb 23, 2026, 13:02Deepak Yadav: What 2025 Evidence Tells Us About Stroke Care
-
Feb 23, 2026, 12:55Radoslaw Kaczmarek: Will AAV Gene Therapy for Hemophilia Trigger Tumorigenesis?
-
Feb 23, 2026, 12:46Heghine Khachatryan: More Granular Risk Stratification Framework for PE from The New 2026 AHA/ACC Guideline
-
Feb 23, 2026, 12:37Reza Shojaei: EU’s Critical Medicines Act and Plasma Resilience
-
Feb 23, 2026, 12:32Anirban Sen Gupta: Emily Mihalko Highlights PlateChek at MTEC
-
Feb 23, 2026, 12:25Ryan Williams: Excellent Highlights on The Heterogeneity of PRP Preparation
-
Feb 23, 2026, 12:10Peter Libby: hsCRP May Select Patients Who Can Benefit From Statins or Anti-inflammatory Therapy