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 […]
NORD Public Policy Team
A conversation with the public policy team for the National Organization for Rare Disorders (NORD). Topics of discussion will include: NORD is a non-profit organization which supports individuals with rare diseases […]
Medical Ethics and Patient Rights
Advocating Responsibly and Communicating Effectively
During a time when families with children with mitochondrial disease may face accusations of medical child abuse or munchausen’s by proxy, it is incredibly important to advocate responsibly and communicate […]
Becoming a Great Advocate: Advice for Complex Patients and Families
Becoming a great advocate: advice for complex patients and families, with Mark Korson MD and Maggie Orr RN. Adult patients, caregivers, parents of affected children – all of us face […]
