Public Meeting Notice  RDAC Full Council Meeting

Overview

Join the meeting online via Zoom.

Agenda

• Welcome
• Roll Call
• Vote to approve minutes from the last full council meeting (July 24, 2025)
• Newborn Screening Update – Dr. Karen McAlmon, MDPH Newborn Screening Advisory Committee Chair
• Newborn Screening Global update – Dr. Olaf Bodamer
• Guest Speaker: Jenn McNary, RDAC member, rare disease advocate, and parent of children with a rare disease.
  • The Economic Burden of Rare Disease in Massachusetts
• Annual Report Outline
• Subcommittee Updates
  • Policy Subcommittee- Glenda Thomas and Representative Joe McKenna
  • Research Subcommittee – Dylan Tierney
  • Healthcare Transitions Subcommittee – Andrew Dwyer
  • Steering Subcommittee – Dylan Tierney
• RDAC Trust Account update
• Announcements 
• Adjourn