Public Meeting Notice  Rare Disease Advisory Council (RDAC) Steering Committee

Welcome

• Roll Call  (Call to order if a quorum is met)
• VOTE on minutes from last Steering Committee meeting
• Review mission statement

The Massachusetts Rare Disease Advisory Council’s (MA RDAC) mission is to provide advice on rare disease research, diagnosis, treatment, and education to the Governor, the Legislature, the Department of Public Health, and the Public.   

• Discussion
• VOTE to approve the mission statement and send it to the full council for a vote on 7/28/22
• Review Legislative Language
  • Identify activities for each charge
  • Discuss priorities for FY23
• Discuss subcommittee structure
  • Review proposed subcommittees:
    • Steering: council oversight
    • Research: survey of incidence and burden of rare diseases, development of best practices for collecting rare disease data
    • Advocacy: policy recommendations, development of state-wide rare disease plan, awareness-raising
    • Fund Raising: grant applications, donations
  • Based on earlier discussion on priorities, organize the charges/activities into appropriate subcommittees
• Review Meeting schedule for full council and subcommittees over next year
  • Review meeting schedule table

Adjourn