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Public Meeting Notice

Public Meeting Notice  RDAC Full Council Meeting

Thursday, January 23, 2025
9 a.m. - 11 a.m.
Posted: January 21, 2025 9:38 a.m.
Join the meeting via Zoom 

Contact

Mary Lou Woodford, RDAC Coordinator

Online

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

Overview

  • Welcome
  • Introducing new council member, Kristen Shannon, LCGC
  • Roll Call
  • Vote to approve minutes from the last full council meeting (November 21, 2024)
  • Guest Speaker:  Nathan Grant, Rare Disease Speaker
  • Massachusetts resources and services for those impacted by rare disease
    • Mass 211 is an easy-to-remember telephone number that connects callers to information about critical health and human services available in their community. It serves as a resource for finding government benefits and services, nonprofit organizations, support groups, volunteer opportunities, donation programs, and other local resources.
    • Guest Speaker: Eileen Davis, VP of Mass211
    • MassOptions connects older adults, individuals with disabilities, and their caregivers with agencies and organizations that can best meet their needs.
    • Guest Speakers: Jodi Breidel and Annette Peele, Executive Office of Elder Affairs (EOEA)
  • Discussion
  • Subcommittee reports:
  • Policy Subcommittee – Glenda Thomas
  • Establishing two new subcommittees
    • community engagement – To provide guidance and support for all community engagement activities of the RDAC by identifying and organizing information about the rare disease community in Massachusetts
      • Five-member committee co-chaired by Jenn McNary and Glenda Thomas
    • research – to provide guidance and support for research activities of the RDAC by identifying and synthesizing existing research to provide evidence for RDAC initiatives including leading and supporting new research projects and collaborations.
      • Five-member committee chaired by Tai Pasquini
  • Announcements: Rare Disease Day, February 28, 2025
  • The Boston Globe presents the Rare Disease Summit on February 25th, 2025 from 9:30 am – 2:05 pm
  • MassBio Presents Rare Disease Forum on February 28, 2025 from 10:00 am – 1:00 pm
  • Adjourn
  • The next full council meeting is scheduled for March 27, 2025.

Meeting Minutes

Open DOCX file, 34.24 KB,  January 23, 2025 - Full Council Meeting minutes (English, DOCX 34.24 KB)

Contact

Online

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

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