Xplore RARE-X

Collecting and Sharing Usable Patient-Reported Data on the Patient’s Terms

Megan O’Boyle discusses the challenges of starting a rare disease patient registry and gives tips on how to avoid the pitfalls. Megan is the Patient Engagement Leader for RARE-X.  She presented at the 13th ORPHAN DRUGS & RARE DISEASES Conference, November 18 – 19, 2020.


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