Global Genes Rare Patient Advocacy Summit 2019
Time & Location
About the Event
Over 1,000 attendees participated in this year's Summit. From Wednesday's kickoff of the Entrepreneur Boot Camp through the final Foundation Alliance Meeting on Saturday, we were busy meeting fellow Rare Disease patients, parents, industry partners and medical experts, some with a rare story of their own. We learned from experts like Mark Dant and Dan Hinmon about effective fundraising and building a strong social media presence. We heard from many doctors and researchers like Manish Butte and Shimul Chowdhury on the latest cutting-edge research and therapies. We connected with rare disease patients like Nathan Peck and Kyle Bryant, parent advocates like Amber Freed, Katie Stevens and Carrie Ostrea. There was an unparalleled sense of community and support unlike anything we'd ever seen. People shared stories, hugs, helpful hints and important contacts. We can't wait to go back next year!