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 funding."

The nut graf: Council members said focusing on a few executable projects now—mapping patient groups, launching social media and staging a January symposium—will help the RDAC build visibility and begin fundraising while it resolves state-level administrative steps required to host a public website.

Bennett and cochair Michelle Spencer Manzan both urged the council to concentrate resources on a limited set of activities to produce measurable results before expanding the agenda. "I think it's better for us to execute a few things really well than try to do 20 things and get our bandwidth too diluted," Spencer Manzan said. She and others discussed partnering with existing nonprofits and media outlets to amplify content and to use a slogan, "Rare is everywhere," on the planned maps.

Council members also discussed practical steps. Bennett said the RDAC needs a state-provided email address to enable social media and an online presence; she planned to raise that with the Department of Public Health. Colleen (last name not stated) was cited by members as able to stand up social media channels quickly once an official RDAC email is in place.

Members discussed using the map as a tool not only for legislators but for public awareness, listing clinics, research projects and industry partners as potential future layers. Joanna Gall and others recommended launching the map in a way that invites organizations to self-identify, using social platforms to prompt groups to request inclusion and thereby reduce omissions.

The council also discussed Rare Disease Day and asked members to approach municipal mayors for local proclamations; Bennett said the RDAC would pursue a governor's proclamation as well. The group agreed to concentrate on the mapping project and social-media presence as the council's immediate priorities and to revisit the full RDAC website and fundraising mechanics after clarifying state guidelines.

Ending: Council leaders said they will refine logistics at future meetings; members were asked to propose dates for the January symposium and to begin outreach to local patient groups and potential nonprofit partners.