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Public Meeting Notice

Public Meeting Notice  Rare Disease Advisory Council (RDAC) Meeting

Thursday, January 19, 2023
9 a.m. - 11 a.m.
Posted: January 17, 2023 8:48 a.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 Minutes

Open DOCX file, 43.79 KB,  Rare Disease Advisory Council Meeting Minutes 1.19.23 (English, DOCX 43.79 KB)

Agenda

  • Welcome  

  • Roll Call   

  • VOTE: to approve the 11/17/22 meeting minutes  

  • Guest Speaker: The Challenges of those Impacted by Hemophilia 

    • Speaker:  Rich Pezzillo 

Workgroup update 

Presentation: Determining the prevalence of rare diseases in Massachusetts  

Speakers:  Tai Pasquini, PhD, MPA    

Discussion 

Future plans for the council to consider:  

  • Legislative forum 

  • Public forum 

Next full council meeting: March 16, 2023  9:00 am – 11:00 am 

Additional Resources   for Rare Disease Advisory Council (RDAC) Meeting

Open PPTX file, 1.05 MB,  Presentation RDAC meeting 1.19.23 (English, PPTX 1.05 MB)

Contact   for Rare Disease Advisory Council (RDAC) Meeting

Online

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

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