How Can Patient Organizations Be Research Ready?

July 10, 2023

Panelists from the 2023 RARE Drug Development Symposium discuss how patient advocacy organizations can be research ready, including collecting and organizing data to be ready for research, patient registries, and clinical trials. The RARE-X program is another resource that can assist patient advocacy organizations to collect data to be highly structured and aligned to existing research standards.

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This video includes interviews that were filmed at the 2023 RARE Drug Development Symposium, May 1-3 in Philadelphia, Pennsylvania. For more information about this event, or to become involved in next year’s event, please visit

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