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Public Meeting Notice

Public Meeting Notice  RDAC Full Council Meeting

Thursday, May 22, 2025
9 a.m. - 11 a.m.
  • Posted: February 21, 2025 2:23 p.m.
  • Last Updated: May 19, 2025 5:20 p.m.
Join the meeting via Zoom 

Overview

  • Welcome
  • Introduce new member: Olaide Adekanbi
  • Roll Call
  • Vote to approve minutes from the last full council meeting (March 27, 2025)
  • Guest Speaker: Rare Disease Speaker Nicole Johnson
  • Transitions from pediatric care to adult care for those with a rare disease – Andrew Dwyer
  • Panel Discussion
    • Nathan Grant, medical student and sibling of Nik Grant
    • Margaret McManus, President of The National Alliance to Advance Adolescent Health and co-Director of Got Transition/Center for Health Care Transition Improvement
    • Erica Barnes, Executive Director of the Minnesota Rare Disease Advisory Council
  • Update on the impact of the discontinuation of the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC): Dr. Olaf Bodamer
  • Subcommittee Updates
    • Policy Subcommittee: Glenda Thomas
    • Research Subcommittee: Tai Pasquini
    • Steering Subcommittee: Dylan Tierney
  • RDAC membership engagement survey results: Tai Pasquini
  • Announcements
  • Adjourn

NEXT FULL COUNCIL MEETING: Scheduled for July 24, 2025. 

Agenda

Open DOCX file, 19.96 KB,  RDAC Agenda 5.22.25 (English, DOCX 19.96 KB)

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