Loading...

Advocacy


CDC New Opioid Guideline – What This Means for the Mito Community

Learn about the new draft CDC Opioid Guideline, how it impacts the mito community and how you can raise your voice to address important topics still to be decided...


Sick Day & Emergency Protocols: Helpful & Potentially Harmful

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...



The Power of Rare Disease Advocacy

“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...


What you Should Know About Disability Rights

Join MitoAction in an informative and exciting discussion with disability advocate and attorney Valerie Powers Smith as she brings to light issues regarding health care insurance and how to...


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...


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...



NORD Public Policy Team

A conversation with the public policy team for the National Organization for Rare Disorders (NORD). Topics of discussion will include: Current federal and state legislative priorities for NORD; NORD’s...