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RDAC schedules in‑person meetings for late 2025, discusses member terms and awareness events
Summary
The Rare Disease Advisory Council agreed on a meeting cadence for July–December 2025 (mix of remote and in‑person), reviewed upcoming awareness events, and discussed member-term renewals that require outreach to appointing officials.
The Rare Disease Advisory Council on April 22 agreed informally to a meeting cadence for the July–December 2025 period, discussed outreach and volunteer staffing for awareness events, and reviewed member-term renewal procedures that require letters from CGA appointing authorities.
The council agreed to keep July remote, aim for three in-person meetings in late summer/fall (proposed dates discussed included Aug. 26, Sept. 23 and Oct. 28), and to hold a combined remote meeting for December (proposed Dec. 9). Members asked staff to send availability checks and to confirm in-person rooms and locations.
Why it matters: RDAC members said in-person meetings will help the council engage legislators, the business community, and providers in separate themed sessions (patient-focused, business/research-focused, and provider-focused), and that rotating meeting locations across the state could increase participation.
Awareness and events Council members encouraged participation in several upcoming events: the Denise DiCenzo Foundation Walk at Quinnipiac (scheduled the coming Saturday, 10 a.m.–12 p.m.) and the Connecticut Rare Action Network picnic at Winding Trails on May 10. Leslie Bennett said the council’s presence at awareness events would help build visibility for RDAC and for organizations that might partner on funding should the council gain fundraising authority under certain bills.
Member terms and appointments Leslie Bennett and Sabra (last name not specified) reported they received renewal letters from Senator Anwar and other appointing authorities had not completed renewals. Amelia (staff) explained the statutory setup assigned initial responsibility to the commissioner of the Department of Public Health, but the appointing letters are now being handled by members of the Connecticut General Assembly. The council asked staff to compile term-expiration information and to follow up with CGA offices to obtain formal renewal letters ahead of September deadlines.
Logistics and next steps - Action items assigned: Craig Miller agreed to explore using a Boehringer Ingelheim facility for a business/research meeting; Michelle Spencer Manzan and others will pursue academic-hosted meeting space; RDAC staff to coordinate room reservations and send calendar confirmations. - The awareness committee will continue outreach and will schedule an initial awareness-committee meeting; interested members were invited to join.
Ending Council leaders closed the meeting after confirming next steps: outreach to appointing authorities on member terms, scheduling outreach meetings with legislative committees, and firming in-person meeting logistics for August–October.
