CTSA News

On leap day, Feb. 29, the Rare Disease Symposium will welcome researchers and patient advocates from across the state at Segra Park in downtown Columbia, from 9:30 a.m. to 2 p.m., with a virtual option available for those who can’t attend in person. Presenters will offer the latest research on rare diseases and explore the unmet needs of the rare disease community in South Carolina. The symposium is being organized by the state’s Rare Disease Advisory Council (RDAC) as an important first step in making a quantum leap forward in rare disease research and patient care.

RDACs are an initiative of the National Organization for Rare Disorders and intended to make state governments more aware of the needs of people with rare diseases so that they can address barriers to their treatment and care.

The RDAC’s diverse statewide membership, including members from research universities, state agencies, healthcare organizations and insurers, ensures that the right players have been brought together to meet the needs of the rare disease community. The state’s RDAC is chaired by the Medical University of South Carolina’s Patrick Flume, M.D., co-director of the South Carolina Clinical & Translational Research Institute (SCTR), which is assisting the council with hosting the symposium…

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