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Yale genetics team invites RDAC members to join UDN community advisory board
Summary
Yale announced it has become a center for the NIH-funded Undiagnosed Diseases Network (UDN) and invited RDAC members and partners to join a new community advisory board to expand access to diagnostics and outreach.
MJ Romero, who identified herself as part of Yale School of Medicine's genetics department, briefed the council that Yale has become one of the Undiagnosed Diseases Network (UDN) centers of excellence and described a new community advisory board to connect research advances to local needs. Romero said the UDN is an NIH-funded effort that combines clinical care and basic research to find answers for people with the most challenging medical conditions.
Romero described the advisory board as a mechanism to "make sure that all the advances in genetics research and care are directly connected with the real needs of our communities," and said the board will meet quarterly. She invited RDAC members and other patient advocates to volunteer via a short survey accessible by QR code and provided an email contact, undiagnosed@yale.edu, for follow-up. Romero said the second advisory-board meeting is tentatively scheduled for September.
Council members thanked Romero for the briefing and for the volunteer opportunity; no formal vote or RDAC action resulted from the presentation. The UDN presentation was scheduled as part of the RDAC's community-speaker portion of the meeting.
