Public Meeting Notice  Rare Disease Advisory Council (RDAC) Meeting

Join this meeting via Zoom

Agenda:

• Welcome  

• Roll Call   

• VOTE: to approve the 9/15/22 meeting minutes  

• Guest Speaker: The challenges in transitioning from pediatric to adult care for someone living with a rare disease 

  • Speaker:  Jenn McNary 

Review of Council Priorities 

Strategic Priority 1  

Improve healthcare access and quality of care for people with rare diseases.  

GOAL:  Determine the prevalence of rare diseases in Massachusetts.  

Strategic Priority 2  

Advocate for and improve access to social supports and services for people impacted by rare diseases.  

GOAL: Develop a profile of rare disease social supports and services in Massachusetts 

Strategic Priority 3  

Foster communication and collaboration to empower the rare disease community in Massachusetts.  

GOAL: Develop a profile of rare disease expert individuals, community-based organizations, voluntary organizations, healthcare providers, and any other public or private organizations with an interest in rare diseases in Massachusetts.  

• Roll Call VOTE to approve goals for the council  

Full Council Discussion: Strategic Priority Workgroup Formation 

• Roll Call VOTE to develop subcommittee workgroups  

Presentation – The rare disease NE data mapping project to determine the prevalence of rare diseases in NE by diagnosis and zip code.  

Presentation by Julie Gortz, founder and CEO of Rare New England 

The purpose of the data mapping project is to begin to generate the geographic data needed to draw a map of rare diseases in NE. The primary objective is to collect location data from as many rare disease patients and families as possible and then map it by zip code to create a snapshot of where rare disease impacts NE.  

Presentation – Health Policy Commission analysis on the increased role of telehealth services in Massachusetts.  

Presentation by Yue Huang, a senior research analyst at the Health Policy Commission.  

The Massachusetts Health Policy Commission (HPC), established in 2012, is an independent state agency charged with monitoring healthcare spending growth in Massachusetts and providing data-driven policy recommendations regarding healthcare delivery and payment system reform. The HPC’s mission is to advance a more transparent, accountable, and innovative healthcare system through independent policy leadership and innovative investment programs. 

• Announcements 

• Adjourn 

Next Full Council Meeting: January 19, 2023