Public Meeting Notice Rare Disease Advisory Council (RDAC) Meeting

Name: Rare Disease Advisory Council (RDAC) Meeting
Start: 2023-01-19T09:00:00-0500 - 2023-01-19T11:00:00-0500

Thursday, January 19, 2023

9 a.m. - 11 a.m.

Posted: January 17, 2023 8:48 a.m.

Join via Zoom

Contact

Mary Lou Woodford, RDAC Coordinator

Online

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

Overview

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

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

Contact

Online

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

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