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Rare Disease Advisory Council to publish vetted resources page, seeks volunteers and subcommittee
Summary
The council agreed to post a curated list of national and Connecticut rare-disease resources on its RDAC web page, form a support subgroup to finalize links and hyperlinks, and pursue outreach and in-person events including a September meeting hosted by Jackson Laboratory.
Colleen Brunetti, a council member and adult living with a rare disease, led discussion on a draft resources list intended for the RDAC web page and said the group should prioritize broadly useful national and caregiver resources before disease‑specific clinic listings. "We might not need to drill down as specific as disease specific to start," she said, urging a concise, usable list.
Why it matters: Members stressed that newly diagnosed families need a reliable, curated starting point and that a state-hosted RDAC page modeled on Virginia's RDAC could direct families to national umbrella organizations (NORD, Genetic Alliance), regional groups (Rare New England), Centers of Excellence and verified clinic information. The council discussed limits on list size, the need for clear category descriptions, and the importance of hyperlinking to prevent dead ends.
Key details and offers of help: Lisa Saroy (Jackson Laboratory) offered to host the September in-person meeting and encouraged clearly described categories on the resource page; Barbara Cass (senior adviser to the commissioner, Department of Public Health) and Adrienne Manning (newborn screening director, Department of Public Health) suggested forming a support subgroup and volunteered assistance with mockups and social-media considerations. Leslie Bennett asked members to send suggestions, volunteer for a subgroup, and provide clinic or program details for the page.
Outreach and partner activity: Wayne Cook (Denise DiCenzo Foundation) described a new awareness initiative called "Denise's Light" and asked that RDAC participate in the presentation; members discussed collaborating with Lions clubs, Netter School of Medicine and local clinics to increase traffic to the webpage. The council also identified Connecticut-specific groups (including a durable medical equipment distribution group referenced in the meeting) to add to the list.
Next steps and timeline: The council agreed to circulate the draft list, limit initial entries to a manageable number per category, create a small support subgroup to finalize hyperlinks and site layout, and aim to have a working page before staff transitions noted in the meeting. The session closed after a motion to adjourn moved by Barbara Cass and seconded by Colleen Brunetti.
Closing note: Jackson Laboratory will host the September meeting; members volunteered to help the web subgroup and were asked to send suggested organizations and clinic details to the chair.
