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Connecticut Rare Disease Advisory Council outlines mapping, social media and January symposium as top priorities
Summary
At a RDAC meeting, cochairs and members agreed to focus the council's near-term work on a statewide patient-group mapping project, building social-media outreach and planning a January symposium at the State House, as foundations for advocacy and fundraising.
The Connecticut Rare Disease Advisory Council on a recent virtual meeting prioritized an awareness-and-advocacy push that centers on a statewide map of patient groups, a social-media rollout and a State House symposium planned for late January. The cochairs and multiple council members said those items will be the RDAC's primary activities over the coming months.
Council cochair Leslie Bennett said the council will use the mapping project and outreach to persuade legislators and the public about the prevalence of rare disease support groups statewide. "There's about a 100 of them," Bennett said, adding the map will be "an advocacy tool...an awareness tool, and it will also be a way that we can start gaining…
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