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Denise’s Light initiative and NORD summit highlighted as awareness priorities
Summary
The Denise DiCenzo Foundation described an October awareness event with the Lions Club and Yale medical partners; RDAC members also noted the NORD Breakthrough Summit in October as an outreach opportunity.
Wayne, representing the Denise DiCenzo Foundation, described an initiative called Denise’s Light to increase rare‑disease awareness year‑round and announced plans for an October event in collaboration with the Lions Club and Yale medical school faculty to highlight rare conditions that affect vision. "We're planning ... an event on October 7 ... in which the medical school, medical students, faculty ... will present information regarding rare diseases that affect the eye," he said.
RDAC co‑chairs also reminded members about the National Organization for Rare Disorders' Breakthrough Summit in Washington, D.C., Oct. 25–27, noting an RDAC session immediately before the summit. Members discussed sending a representative and using the conference for outreach to regulators, researchers and advocates.
