Meet Sue Leone!
TRAILER - PARENTS AS RARE I am Adam Johnson, a dad and rare disease patient advocate, a self-proclaimed Dadvocate. From the onset of symptoms...
ENERGY IN ACTION - EPISODE 093 Navigating School for Our Kiddos Beth Folcher is a parent and teacher. She joins us to kick off...
Patient-Focused Drug Development (PFDD) meetings are one of the most powerful advocacy tools available to rare disease communities—but most patients have never heard of...