Project Description
NORD SUMMMIT
"NORD Summit "Motivations for joining rare disease online support communities"
About this Poster
Inspire conducted this research in partnership with the Foundation for Sarcoidosis Research and Neurofibromatosis Network. Through written reflections, 20 interviews, and a survey with 139 respondents, this study explored why rare disease patients and caregivers initially join online support communities versus why individuals stay in these communities over time.
