RDAC members outline statewide rare-disease events and a proclamation campaign

Multiple RDAC members and guests described a slate of statewide outreach events aimed at raising awareness and building participation. Lisa (filling in for Jody Gillen of BioCT) previewed the Connecticut Rare Disease Forum at the Jackson Laboratory in Farmington on March 17, with a keynote by Tim Yu and panels on gene therapy and policy/regulatory impact. Lisa said RDAC members, patient advocates and legislators are invited to register free.

Michelle Spencer Manson announced a free Yale Rare Disease event on Feb. 20 at the Peabody Museum with family activities and meet-and-greet opportunities. Brian Rosen described a partnership between the Bridgeport Islanders and Uplifting Athletes for a rare-disease night on Feb. 17 with discounted tickets and in-game awareness messaging. Chair Leslie Bennett announced an RDAC Rare Disease Day awareness forum on Feb. 24 in Hartford.

Colleen Brunetti outlined an awareness campaign called "Connecticut, rare is everywhere," asking local organizations to request proclamations from mayors and boards for Rare Disease Day (Feb. 28) and to display those proclamations at the Feb. 24 forum. Brunetti said sample templates and a short and long proclamation format were circulated to committee members. RDAC members encouraged cross-promotion and use of NORD's national Rare Disease Day event tracker to list local events.