Show notes
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.