Our latest Weekly Warrior is 28 year-old Danielle, who shares her journey with congenital myopathy of unknown origin since childhood in this video. It is frustrating not to know the … READ MORE

All of us at Rare Patient Voice wish you and yours a safe and happy Fourth of July 2023!

Dylan is our latest Weekly Warrior. He lives with an extremely rare metabolic disorder, MDP syndrome (Mandibular hypoplasia, Deafness and Progeroid features), that prevents fatty tissue from being stored under … READ MORE

  Our latest Weekly Warrior is Michael, a passionate young cancer advocate and social media influencer. In 2020, he was diagnosed with a rare form of lymphoma and went on … READ MORE