Council unveils 'Connecticut Rare Is Everywhere' map, reschedules Rare Disease Day and lists outreach events
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Summary
Council member Colleen Brunetti presented a statewide map showing roughly 80 patient-facing organizations, the group tentatively rescheduled Rare Disease Day for March 16 at the LOB, and members discussed display materials and outreach with partners including Jackson Laboratory and the Denise DiCenzo Foundation.
The Rare Disease Advisory Council previewed a new statewide mapping project to highlight patient-facing rare-disease organizations and discussed logistics for an upcoming Rare Disease Day at the Capitol and related outreach events.
Colleen Brunetti described the "Connecticut Rare Is Everywhere" map, which currently identifies about 80 patient-facing organizations. The map is color-coded to show towns with one or two organizations, towns with three or four, and a few locations with five or more. Brunetti said the group plans large 24-by-36 posters to display at the Capitol for Rare Disease Day and intends to expand the map later to include businesses and research institutions.
Event scheduling and outreach: Leslie Bennett said Rare Disease Day was tentatively rescheduled for March 16 from 9 a.m. to noon in the 2nd Floor Atrium at the LOB; she asked members to confirm speaker availability. A Jackson Laboratory representative said JAX will host a forum on March 18 in Farmington focusing on emerging therapies and invited council members and patient advocates to attend at no cost. Council members also discussed partnering with the Denise DiCenzo Foundation for broadcast outreach across state channels.
Procedural items: Bennett asked members to review and approve a circulated draft of the council’s annual report; she said, "If it looks okay to all of you who are here on the call today...we should get it to the public health committee, the governor's office by the end of this week." Because a quorum was not present, members agreed to circulate amended minutes and return comments so the group can vote next month.
Adjournment: Michelle Spencer Manzan moved to end the meeting and Colleen Brunetti seconded; the chair closed the session without a roll-call vote.
Next steps: Council staff will send the finalized map files and event materials to members, circulate the updated annual-report draft for final comments, and follow up on logistics for poster display and media outreach.
