Connecticut Rare Disease Advisory Council to host first public meeting
NEW HAVEN, CT (WFSB) – The Connecticut Rare Disease Advisory Council (RDAC) announced its first in-person, public meeting.
The meeting will be held Tuesday, April 23 at 1 p.m. at the Yale University Sterling Hall of Medicine (Room I-304) at 333 Cedar Street in New Haven.
“During the first hour of the meeting we hope to hear from members of the CT Rare Disease Community about issues and the challenges they face on a daily basis,” officials said.
These members include patients, caregivers, physicians, nurses, medical students, and more.
Anyone who would like to speak at the meeting is asked to contact Melia Allan at melia.allan@ct.gov.
The meeting can also be attended virtually.
You can read the agenda below:
1. Introduction a. Members should state their name and role on RDAC
2. Purpose of meeting a. Receive Input from the Public (1-2pm) on issues important to the CT rare disease community; RDAC discussion (2-3pm) of Bylaws, Katie Beckett Waiver Program; Rare Disease Survey; and new business;
3. Summary of February meeting a. Bylaws, Rare Disease Issues, In-person meetings; approve minutes
4. Public Comment Session (1-2pm) a. Call for speakers or read written testimony submitted to council
Formal RDAC meeting begins (2-3pm)—public invited to attend
5. Update on Bylaws a. Bylaws subcommittee; Craig, Colleen, Lesley
6. Legislative Update: a. HB 5367: Medicaid coverage rWGS infants b. SB 206: Katie Beckett waiver expansion c. SB 175: Funding for RDAC
7. Katie Beckett Waiver: Overview by DSS
8. Rare Disease Survey Draft
9. New Business: a. Rare Disease Event Calendar b. Social Media-Awareness Update
10. Closing: Motion to end meeting
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