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Public Meeting Notice

Public Meeting Notice  Rare Disease Advisory Council (RDAC) Meeting

Thursday, September 15, 2022
9 a.m. - 11 a.m.
Posted: August 30, 2022 1:44 p.m.
Join via Zoom 

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 this meeting via Zoom

 Meeting ID: 820 9015 0452 

Passcode: 443686 

Agenda

  • Welcome  

  • Roll Call   

  • VOTE: to approve the 7/28/22 meeting minutes  

  • Presentation: Living with a Rare Disease 

    • Speaker:  Tasia Rechisky 

  • Discussion: Council Priorities 

  1. Improving healthcare access and quality of  care for  people with rare diseases 

  1. Advocate for and improve access to social supports and services for people impacted by rare diseases 

  1. Foster communication and collaboration to empower the rare disease community in Massachusetts 

  • VOTE: Council Priorities 

  • RDAC Goals Discussion 

  • Nominate members for subcommittees 

    • Research 

    • Advocacy and Policy 

    • Fundraising 

  • Review Operating Procedures Draft 

  • Discussion: Operating Procedures 

  • VOTE: Operating Procedures 

  • Review 180-Day report DRAFT 

  • Discussion 

  • VOTE: 180-Day Report 

  • Adjourn 

Additional Resources   for Rare Disease Advisory Council (RDAC) Meeting

Open DOCX file, 116.83 KB,  Standard Operating Procedures (English, DOCX 116.83 KB)
Open PDF file, 35.26 KB,  Strategic Priorities (English, PDF 35.26 KB)
Open PDF file, 847.46 KB,  RDAC Meeting Presentation (English, PDF 847.46 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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