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Rare Disease Advisory Council launches mapping project, plans advocacy push and term review
Summary
The RDAC agreed to give direction to its awareness and advocacy committees: Colleen Brunetti outlined a working group to build an interactive Connecticut rare‑disease map and database for patients, providers and industry; council leadership urged targeted education for legislators and state agencies and asked members to consider term renewals.
Colleen Brunetti, the RDAC's adult living‑with‑rare‑disease representative and chair of the awareness committee, described a working group that has begun scoping an interactive map and database to show Connecticut’s clinics, research centers, patient groups and industry resources.
Brunetti said the working group — roughly six to seven core volunteers from a larger pool of about 15 interested people — will explore a tool that “would really show, interested members of the public, families, caregivers, medical professionals, and businesses, how much Connecticut could be sort of the epicenter of the rare disease world in The US.” She said the group planned an initial meeting and would trial both daytime and evening time slots to allow broader participation.
RDAC co‑chair Leslie Bennett said the council must move beyond awareness to active education of the Connecticut General Assembly and state agencies so officials understand the size and composition of the rare‑disease community. Bennett described a three‑phase approach recommended by other RDACs: education for policymakers, public hearings to surface the most pressing community needs, and then developing actionable solutions. She asked clinicians and committee members to be ready to help present to legislators and agencies.
Administrative items: the council discussed scheduling three in‑person meetings for the year (August, September, October) and asked members to confirm attendance. Bennett said roughly half the council’s terms will expire in September and asked members who want reappointment to notify staff by July so letters can be drafted and sent. She said the council will work with Senator Anwar on term‑limit paperwork.
Minutes vote: the council took a procedural vote to accept the April meeting minutes. The motion was made from the floor (recorded in the transcript by a member identifying herself as Colleen Brunetti) and seconded; the chair asked whether there were any objections. The meeting transcript recorded multiple affirmative votes and at least two abstentions; the chair declared the minutes passed.
Next steps: the awareness working group is open to new volunteers; Brunetti offered to circulate meeting login details. Bennett asked the advocacy committee to prepare targeted education sessions for legislators and state agency staff over the summer and early fall. The council also discussed holding at least one on‑site meeting in western Connecticut and coordinating dates so members can plan travel.
