The ERN-Skin and the René Touraine Foundation are organizing the 1st World Congress on Rare Skin Diseases, which will take place in June 2022. GlobalSkin has been asked to co-organize a patient session during the event. The Congress will bring together medical and paramedical teams, scientists, patient representatives, policy makers, as well as industry stakeholders. The goal for this event is to improve patient care, develop collaboration and increase research! Watch your inbox for more information and the preliminary programme. February 28, 2022 is #RareDiseaseDay. GlobalSkin and its 90 RareDERM Community Members look forward to adding our voices to this important day where we raise awareness for rare dermatological diseases. GlobalSkin will be sharing resources for the 2022 campaign in January. This year, GlobalSkin encouraged the RareDERM community to support and help propel the campaign to establish a UN Resolution on Persons Living with a Rare Disease and their Families (led by RDI, EURORDIS, and the NGO Committee for Rare Diseases). We are pleased to share that later today, the UN General Assembly (UNGA) will formally adopt the first-ever UNGA Resolution on “Addressing the Challenges of Persons Living with a Rare Disease and their Families.” |