Posted:
September 18, 2023 10:34 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
Mary Lou Woodford, RDAC Coordinator
Overview
Meeting Minutes
Open DOCX file, 41.22 KB,
September 21, 2023 - RDAC Steering Committee Meeting Minutes
(English, DOCX 41.22 KB)
Agenda
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Welcome
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Roll Call
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Guest Speaker: Access to social services and resources for children and families with a rare disease
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Pamela Chamorro, MSW, LICSW, Director of Social Services, Boston Children’s Hospital
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Guest Speaker: Creating a structure for an annual report to the state legislature and developing impactful recommendations
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Barbara L’Italien, Executive Director of the Massachusetts Disability Law Center, (former State Representative and State Senator)
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RDAC Virtual Town Hall October 21st, 2023
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Questions
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Logistics
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Marketing and Recruiting (Flyer)
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Workgroup 1 update – Dr. David Miller, Chair
Presentation of Final Draft of Prevalence Paper
VOTE: to approve the paper
Workgroup 2 & 3 update – Jen McNary, W2 Chair
Discussion of Final Survey Tool, marketing, and outreach
VOTE: to approve the 7/20/23 meeting minutes
Announcements
Next full council meeting: November 16, 2023, 9:00 am – 11:00 am
Additional Resources
Open DOCX file, 18.89 KB,
RDAC Steering Committee Meeting Agenda - September 21, 2023
(English, DOCX 18.89 KB)