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Public Meeting Notice

Public Meeting Notice  Rare Disease Advisory Council (RDAC) Meeting

Thursday, March 28, 2024
9 a.m. - 11 a.m.
Posted: March 21, 2024 8:21 a.m.

Contact   for Rare Disease Advisory Council (RDAC) Meeting

Mary Lou Woodford, RDAC Coordinator

Online

Email Mary Lou Woodford, RDAC Coordinator at marylou.woodford@mass.gov

Overview   of Rare Disease Advisory Council (RDAC) Meeting

Join remote meeting via Zoom

Agenda:

  • Welcome  
  • Roll Call   
  • VOTE to approve minutes from the last full council meeting (January 18, 2024) 
  • Guest Speaker: Sheilah Gauch and Jennifer Vitelli, both parents of children diagnosed with a rare disease and co-facilitators of the PANDAS/PANS Advisory Council.  
  • Guest Speaker: Carolyn Sheridan, MPH 
    • State Policy Manager, NORD 
  • Community Engagement Workgroup update: Jenn McNary 
    • Website Redesign  
  • Legislative Briefing Summary 
  • Renewals/New Appointments/ Steering Committee  
  • Announcements 
  • Next council meeting: Scheduled for May 16, 2024.  
  • Adjourn 

 

Additional Resources   for Rare Disease Advisory Council (RDAC) Meeting

Open DOCX file, 18.08 KB,  March 28, 2024 - Rare Disease Advisory Council Meeting (English, DOCX 18.08 KB)

Contact   for Rare Disease Advisory Council (RDAC) Meeting

Online

Email Mary Lou Woodford, RDAC Coordinator at marylou.woodford@mass.gov

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