Openly Rare
State of Possible, Live! -005
Mar 11, 2019 · 45 min
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A re-broadcast of a patient panel discussion at the MassBio annual Rare Disease Day event that took place on February 28, 2019. The panel was titled “Patient Well-being Beyond Outcomes” and featured an honest and often emotional discussion on the needs of rare disease patients beyond medical treatment, and offered an insight into the day-to-day life of a patient. Paul Kidwell moderated the panel that also featured Lisa Deck, Austin Leclaire and Keisha Greaves. Connect with the creator of Openly Rare at here.

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