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Rare Disease Advisory Council plans DPH‑hosted website, curated resources and a team for Denise Denzo Foundation walk
Summary
The council discussed building a richer landing page on the Department of Public Health website, legal limits on email outreach and resources, an expansion of the 'In Connecticut Rares Everywhere' map, and forming a council team for the Denise Denzo Foundation walk on April 25.
Council members reviewed recent outreach activities and plans to expand public information and event presence. Colleen Brunetti reported on a successful Rare Disease Awareness Day and described the rollout of an 'In Connecticut Rares Everywhere' map that currently lists nonprofits and support groups; members said they plan to add businesses, research and industry in coming months.
A DPH technical lead explained the department recently migrated its website and can create a more advanced landing page for the council if the council provides a single document with the desired content. "The DPH website got migrated, got its little facelift this fall. I can create a more advanced landing page for you all," staff said, and asked for a word document or consolidated email with members, resources and reports to publish.
Members discussed building an email list for outreach but were cautioned about legal requirements: express consent for recipients, an unsubscribe option and a physical address are required before sending mass emails. The council agreed to defer active email outreach until they receive guidance from DPH communications and legal teams.
The group also discussed practical resource curation: members asked whether links to hospital programs, training videos and nonprofit resources could be posted. DPH staff recommended neutral links to official organizational pages rather than medical interpretation or personalized advice, and said some items may require case‑by‑case legal review.
The council agreed to form an ARDAC team for the Denise Denzo Foundation walk (Saturday, April 25 at Quinnipiac University), to repurpose awareness‑day materials for event flyers and a table, and to consider printed assets and t‑shirts to increase visibility.
