Posted:
July 25, 2022 8:44 a.m.
- This page, Rare Disease Advisory Council (RDAC) Meeting, is offered by
- Rare Disease Advisory Council
- Department of Public Health
Public Meeting Notice
Public Meeting Notice Rare Disease Advisory Council (RDAC) Meeting
Contact for Rare Disease Advisory Council (RDAC) Meeting
Mary Lou Woodford, RDAC Coordinator
Overview of Rare Disease Advisory Council (RDAC) Meeting
RDAC Full Council Meeting
Join meeting via Zoom
Meeting ID: 821 1542 7487
Passcode: 718524
Meeting Minutes
Open DOCX file, 39.36 KB,
Rare Disease Advisory Council (RDAC) Meeting Minutes July 28, 2022
(English, DOCX 39.36 KB)
Agenda
- Welcome
- Roll Call
- VOTE: to approve the 6/23/22 meeting minutes
- Presentation: Living with a Rare Disease
- Speaker: Glenda Thomas
- Discussion: proposed mission statement
“The Massachusetts Rare Disease Advisory Council’s mission is to provide guidance and recommendations on rare disease incidence and the status of the rare disease community to the governor, the legislature, and the department of public health with the goal of improving the lives of people impacted by a rare disease in the commonwealth.”
- VOTE on our mission statement
- (voted and approved by steering committee on 7/14/22)
- Discussion: Proposed New Subcommittees
- Research
- Advocacy and Policy
- Fundraising
- VOTE to approve new subcommittees
- Discussion: Setting MA RDAC priorities
- Speaker: Representative Hannah Kane
- Review Future meeting schedule
- Adjourn