Public Meeting Notice  RDAC Full Council Meeting

Overview

This is an online meeting via Zoom.

Agenda

• Welcome
  • Guest Speaker: Commissioner Robbie Goldstein, MD, MPH
• Roll Call
• Vote to approve minutes from the last full council meeting (September 25, 2025)
• Speaker: Alexsandra Mahady, RDAC member, rare disease advocate, and parent of a child with a rare disease.
• Economic Burden of Rare Disease Study Update – Tai Pasquini
• Healthcare Transitions Subcommittee Update – Andrew Dwyer
• NORD Summit Update and RDAC 2026 Priorities – Jenn McNary and Tai Pasquini
• Newborn Screening Update and Discussion – Dr Olaf Bodamer
• Other Subcommittee Updates:
  • Policy Subcommittee- Glenda Thomas
  • Research Subcommittee – Tai Pasquini
  • Steering Subcommittee – Dylan Tierney
• Announcements
• Adjourn