Rare Disease Advisory Council organizes awareness projects, Denise DiCenzo Foundation walk and family picnic

The Rare Disease Advisory Council’s awareness committee told members it will begin organizing outreach projects and public events if funding authority is secured. Committee members described plans for a rare‑disease mapping project for Connecticut, expanded web and social‑media presence and a schedule of spring events.

Helene, leading the awareness committee update, said she will gather volunteer contact information and schedule the subcommittee’s first meeting in April. "We have a couple of things that we're looking at for the awareness committee to be working on. There is interest in having a mapping project of rare diseases done for the state of Connecticut, spreading news and having a presence at events," she said.

Council members promoted two public events: the Denise DiCenzo Foundation walk on April 20, which the committee expects to seek press coverage from WFSB and WTNH and to recruit a council team, and a free family picnic on May 10 hosted by the Connecticut Rare Action Network at Winding Trails in Farmington. Allison, a CT RAN board member, described the May 10 picnic as "no cost to rare disease patients, families, friends, allies," with accessible facilities at Winding Trails and family‑friendly activities from 1 to 4 p.m.

Wayne Cook and other community members volunteered to help recruit local civic groups such as Lions clubs and local media partners to broaden outreach. Committee members said the availability of funding will determine the pace of website changes, mapping work and paid media, and that they will circulate flyers and registration information to the full council.

The awareness items were informational; the council did not vote on event approvals at this meeting.