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
Research on acceptance
This post is dedicated to Béatrice de Reviers who is herself a doctor and owner of the CMN. She is researching the psychological impact of living with CMN. In her article, she discusses the difference in the way people deal with their visible difference. There are three categories: 1. the nevus is just a simple …. 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