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Rare Caregivers Corner: Q&A with Stephanie
“I took a week away to have some mommy time.”
NORD Survey to Better Understand Rare Disease Diagnosis, Care and Treatment in the US: Take Part in Our 30 Year Follow-up
“At NORD, we know that patient-powered initiatives change the world. Our priority is advancing rare disease research and innovation by working together to overcome critical challenges. ”
Reflections of a First Time NORD Summit Attendee: Matthew’s Story
“In the end, I leave the NORD 2019 Summit and move into the following days and weeks decidedly not in the same manner that I entered: understanding that The Time Is Now.”
Rare Caregivers Corner: Cathy’s Respite Story
“Family offers to help but it was SO important for me to have someone who knew how to handle any medical situation that might arise while we were gone.”
