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 …
Continue reading “Plenary: Building Resilience in a Time of Unknowns”
Topics include: • Living Undiagnosed: The Endless Diagnostic Odyssey • Parents of Newly Diagnosed Rare Pediatric Patients • Rare Despair and Bereavement • Rare Men • Rare Teens • Rare Young Adults • Rare Self Care TelePlay with Project Sunshine for children ages 5-9 Chair Yoga with Erin Marsh Sound Bowl Meditation with the Dojo …
Continue reading “Wellness, Networking and Discussion Groups”
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.