Author: admin-marjolein

representing CMN at Eurordis ERN skin meeting

0 commentsEurordisPatient AdvocacyERNskin

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

0 commentsPatient AdvocacyPatientJourney

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

New website!

0 commentsLatest news

Welcome to the new Naevus Global website. I hope this will help the worldwide nevus community to better connect, support each other, and work together. If you find incorrect information/links/translations, please let me know by contacting Naevus Global. “Alone we’re rare, together we’re strong” Connect everyone! We can do this. Keep strong, safe, and healthy. ….  Read More