Episode 8 — On location: Global Genes RARE Patient Advocacy Summit

Rare in Common: the podcast

This episode is the first in a special series recorded live at the 7th annual Global Genes RARE Patient Advocacy Summit—the largest worldwide gathering of rare disease patients, advocates, and thought leaders. First, Angie Rowe, Interim Executive Director of Global Genes, reflects on how exciting it is to spend time at the conference after all of her team’s hard work in bringing it to life. She also talks about how the summit inspires and empowers attendees, newcomers and veterans alike. Next, we hear from 2 first-time summit attendees, Christine Von Raesfeld, who was diagnosed with a bleeding disorder called thrombotic thrombocytopenic purpura at the age of 14, and Amanda Jaksha, mother of a child who was diagnosed with CDkl5 deficiency in 2012. After just a few hours at the summit, these women speak about the electricity and camaraderie at this event that make it unique.