- Posted: September 7, 2023 9:32 a.m.
- Last Updated: October 24, 2023 9:31 a.m.
- This page, RDAC Virtual Town Hall, is offered by
- Rare Disease Advisory Council
Public Meeting Notice
Public Meeting Notice RDAC Virtual Town Hall
Overview of RDAC Virtual Town Hall
Help the council understand the needs of people living with a rare disease in Massachusetts. The council is seeking individuals from the following groups to provide testimony to the council.
- Patients and Caregivers
- Help us understand your greatest challenge in managing your rare disease. What resources are most important to you, and which ones are hardest to find and access?
- Healthcare Providers
- Share your experiences and advise the council on ways to improve the care for those with a rare disease.
- Advocates and Advocacy Groups
- Provide insights into the challenges and opportunities for improving the lives of those with a rare disease.
Registration Options
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Attend
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Attend and give oral testimony
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Cannot attend but will provide written testimony
Register online at https://bostonu.qualtrics.com/jfe/form/SV_7ZAIOJ2signh6o6
Agenda
The meeting is open to the public but requires registration. Register online.
________________________________________
- Welcome:
- Dr. Dylan Tierney, RDAC Chair and co-facilitator
- Jenn McNary, RDAC member and co-facilitator
- Welcome:
- Representative Hannah Kane, RDAC Council member
- Representative Jay Livingstone, RDAC Council member
- Senator Paul Feeney, RDAC Council member
- Introduction of Rare Disease Advisory Council members present
- Public Testimony
- Announcements
- Adjourn
Additional Resources for RDAC Virtual Town Hall
Open DOCX file, 32.79 KB,
October 28, 2023 - Virtual Town Hall Meeting Special Report
(English, DOCX 32.79 KB)