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Council unveils 'Connecticut Rare Is Everywhere' map, reschedules Rare Disease Day and lists outreach events
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…
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