Webinar Overview

This webinar includes three panelists, Deven McGraw, Charlene Son Rigby, and Dr. Jacob Donoghue, who dive into the importance of data sharing in rare disease research. Deven McGraw is the co-founder of Ciitizen, a company which works to put all of a patient’s health data into the hands of rare disease patients and families. Charlene Son Rigby is the CEO of Rare-X, a platform to gather, structure, and share patient-level data to support research and therapy development for rare disease patients. Finally, Dr. Jacob Donoghue is the CEO and co-founder of Beacon Biosignals, a platform for integrating brain data to support the development of novel precision medicines for neurologic and psychiatric disease. In this webinar, the panelists discuss the key barriers to rare disease research and what their companies are doing to remove them. These barriers include a lack of data for rare disorders, having trouble getting scientists interested in studying a rare disorder, and data access being competitive amongst scientists. However, their companies are combating these barriers by making advancements in data sharing - these advancements majorly shrink the time it takes for drug development or natural history studies. Throughout the webinar, all three panelists give incredible insights about rare disease research and data access which will shape the way data is shared in the future.

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