Our concluding session will be a message of hope and inspiration for those who cope with a rare disease diagnosis from someone who is doing just that. Jackson Goodrich is a 17-year old who was diagnosed with a genetic kidney condition called Dent disease when he was 5 years old. Join him as he relates …
Continue reading “Closing Keynote Address: Dented, Not Broken”
New innovations are helping to advance the diagnosis, treatment and care of rare disease patients. This session will highlight current government initiatives and new technologies that can benefit rare disease patients and their families, now and in the future.
Topics: Transitioning from Pediatric to Adult Care Shared Decision-making with Your Care Team Getting Involved in Rare Disease Advocacy Rare Relationships and Dating Self-care for Rare Caregivers Transitions out of the Home to Independent Living and College Newly Diagnosed and Finding a New Normal Living Undiagnosed Rare Despair, Bereavement, and Anticipatory Grief Rare Awareness and Connections on …