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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…
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