Ryan Rodarmer: The Power of Storytelling in Rare Disease Care
Ryan Rodarmer, Director, The VEDS Movement at The Marfan Foundation, shared a post on LinkedIn:
“In February 2027, I’ll be the keynote speaker for the 8th Annual Rare Disease Day conference hosted by the Rare Disease Network of West Michigan (a collaboration among Calvin University, Corewell Health Helen DeVos Children’s Hospital, MSU College of Human Medicine, Pine Rest Christian Mental Health Services, and Van Andel Institute).
The theme is storytelling. That felt right the moment I read it.
The people I sat with in that genetic counseling office for over sixteen years – their stories are part of my own now.
They’re threaded through every talk I give, every resource I help build, every time I try to make a new diagnosis a little less frightening.
Stories do that work… reducing isolation, opening doors, giving people language for something they’ve been carrying alone.
If you’re a former patient or colleague, I would love to see you there.”
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