Patient organizations are often successful in organizing gatherings and conferences. But nowadays more is asked from patient organizations. Patient organizations are asked to participate at an equal level with doctors, researchers, and policymakers (e.g. participate in the development of guidelines, standards, drugs, determine policy). This is great because in order to make decisions in healthcare they want to learn from us – our story!
In 2019 we created a patient journey with goals and challenges for people with CMN – our experiences with CMN, our story!