representing CMN at Eurordis ERN skin meeting
ERN-skin virtual board meeting The following was discussed: A patient survey in (7 languages) for the ERNs (hospital) is finalized CPMS (clinical patient management system), where doctors and patients can consult each other online is not yet working. A helpdesk was launched. A registry project is launched to connect and share sufficient data for Rare …. Read More
Patient journey
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 …. Read More