ARDAC to revise bylaws, address quorum shortfalls and plan July public meeting at Yale

Members of the Advisory Council on Rare Diseases (ARDAC) agreed in their June virtual meeting to assemble a bylaws working group to revise the council’s governance rules, address attendance and holdover provisions, and to plan a public meeting in July.

The council’s co-chairs and members said the original bylaws were drafted quickly to get the council running and lack provisions that have created operational problems — most notably a holdover clause allowing officers and members to remain in their roles until successors are appointed. A member said that omission recently prevented a chair from sharing meeting materials and recordings after her term technically expired.

Council members agreed on two immediate steps: Barbara Cass (senior advisor to the commissioner, Department of Public Health) will circulate the current roster and attendance records for follow-up; a volunteered working group (members who offered to help include Michelle Spencer Manson, Leslie Bennett and Michaela Razo, with Joanne/Joanna also volunteering) will draft proposed bylaw changes and aim to finish work by September.

The group discussed practical approaches for drafting the revisions, including shared documents, virtual review and a short survey to re-confirm members’ continued interest and ability to participate. Barbara offered to check whether a formally constituted bylaws subcommittee would itself have public-posting and minute requirements under FOIA and to report back to the executive team.

Separately, the council planned a July public meeting to maintain community engagement. Members discussed holding the session in person at Yale with virtual access and indicated the date as the fourth Tuesday of July (identified in the meeting discussion as July 28), from 1 p.m. to 3 p.m. Potential topics and speakers mentioned included patient stories, coverage issues (including a recent publicized complaint about automated insurance denials using AI), and challenges with home-health and coverage for over-the-counter medications. Members said they would collect speaker suggestions and coordinate logistics; students and patient advocates were explicitly welcomed to attend.

No formal votes on bylaws or appointments were taken because the council did not have a quorum at the June meeting. At the end of the session a motion to adjourn was made and seconded; the transcript records the motion and second but does not include a roll-call vote.

Next steps recorded in the meeting: the bylaws volunteers will draft language (targeting completion by September); Barbara Cass will share roster and attendance records so members can be surveyed; and staff will confirm FOIA posting requirements for any formal subcommittees.