Rare disease patient advocates from around the world will be working to raise awareness on World Rare Disease Day, happening on the “rarest” day of the year– February 29. Last year a group of patient advocates in Utah joined forces to create a statewide effort with great success. We spoke to Gina Szajnuk, Co-Founder and Executive Director of Rare and Undiagnosed Network and Committee Chair for Utah Rare 2016, about the experience in Utah, why it was successful, and what was learned last year that’s shaping this year’s approach.
RARECast is a weekly series by Daniel S. Levine. Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. He founded Levine Media Group in 2013, which produces The Bio Report and RARECast podcasts. Read his full bio here.