Kristie DeMarco, Global DARE Foundation's president was recently interviewed by Patient Worthy which is an online publication that provides relevant information to rare disease patients, caregivers and advocates alike. They just published her 3-part interview on their website. She is a very private person but felt that talking about her story will help others with the confidence to trust in themselves and push doctors and specialists to get to a diagnosis. She also wanted to let people know that one person can make a difference and mobilize a community to find a cure even if the disease is rare. Anything is possible!
https://patientworthy.com/category/refsum-disease/
#CureRefsum #NeverGiveUp #PatientPower