Plenary: Building Resilience in a Time of Unknowns

Post by sroberts in on April 15, 2021

People living with a rare disease build and practice resilience through their long diagnostic journeys, while waiting for new treatments and adaptation to a new normal. During the COVID-19 pandemic, many rare disease patients experienced increased feelings of isolation as they adjusted further to keep themselves and their loved ones safe. Join us to hear …

Opening Plenary: The Patient-Professional Partnership

Post by sroberts in on April 9, 2021

People living with rare diseases and the clinicians and researchers seeking to help them often develop unique and mutually rewarding partnerships. Three inspiring stories will touch on the close bond between patients and their care professionals.