“The Power of Rare Disease Advocacy”
Advocates are the key to creating real change. Learn the power that you as a patient and caregiver have, what you can do to move the needle for your rare disease and how to get more involved!
Shannon von Felden is the Director of Rare Disease Legislative Advocates, a program of the EveryLife Foundation for Rare Diseases. She works with rare disease advocates across the country to engage at the local, state, and federal level. She began her career on Capitol Hill as a Legislative Assistant for Congresswoman Shelley Berkley (NV) working on health care and veterans affairs issues. Shannon has worked with national nonprofit organizations to further their policy and advocacy goals including Juvenile Diabetes Research Foundation and National Osteoporosis Foundation. She received her Master of Public Policy from American University.Date: 02/07/2020
Join MitoAction and Dr. Mark Korson, VMP Genetics, as he discusses sick days, navigating the ER as a patient, and the importance/challenges of protocol letters within the mitochondrial disease community.