Get AI Briefings, Transcripts & Alerts on Local & National Government Meetings — Forever.
RDAC approves meeting schedule, posts annual report and gets DPH guidance on website and social media
Summary
At the RDAC meeting, members voted to cancel an August meeting, set summer and fall meeting dates, approved posting the annual report, and received guidance from Department of Public Health staff on website hosting, calendars, and guardrails for RDAC social media accounts.
The Rare Disease Advisory Council voted on internal scheduling and administrative items and received clarifying guidance from Department of Public Health staff on web hosting and communications. Barbara Cass (senior adviser to the commissioner at the Department of Public Health for long-term care) made a motion to eliminate the August 25 meeting and to convene June 23 and July 28; the motion was seconded and carried by voice vote in the transcript. Leslie Bennett moved that public meetings be held in July, September and October; that motion also carried by voice vote.
Members approved finalizing and posting the RDAC annual report to the website; the transcript records at least two recorded 'aye' votes in favor and one abstention by a member who said they had not been involved with that reporting year. The council also approved February and March meeting minutes by voice votes with some abstentions noted.
DPH staff outlined administrative support and legal boundaries for RDAC communications. Mikaeli Grama (RDAC web staff, Connecticut Department of Insurance as identified in introductions) said the RDAC can maintain external social media accounts and a shared calendar but must not use DPH branding on external pages. "You are allowed to create social media accounts. We just ask that you do not put DPH branding on it," Grama said. DPH staff offered to post approved content on the state-managed Sitecore website if the council provides text and links in a single Word document, but they recommended an external shared calendar for nimbleness because state website updates require layered approvals.
Web staff also warned the group of a staffing transition: the staff member supporting RDAC website updates said she is leaving state service in June and recommended the council provide content by June 1 to ease the handoff. Members agreed to compile resource lists and to create an outline for the website; Michelle Spencer Manson volunteered to produce a 3–4 section outline and set a two-week deadline for contributions.
Members discussed in-person venue rotation and accessibility, naming Jackson Labs, Yale medical school and sites in eastern Connecticut as candidate locations; members noted the RDAC has no dedicated budget for paid meeting space. The meeting closed after a motion to adjourn.
