Who we are

In 2013, the first international congress for congenital melanocytic nevus was organized in Marseille, France. During this congress, Naevus Global is established by twelve national patient organizations (including those from the US, Australia, Italy, Germany, France, the United Kingdom, Spain, and the Netherlands). Stefan Wilms from the Netherlands becomes the chairman, later followed up by Michelle Sibbons from Australia. In 2017 Marjolein van Kessel from the Netherlands takes over this role. Picture down left: Michelle Sibbons, right: Stefan Wilms, middle Lucy Harwidge. The picture above: founding of Naevus Global, Marseille 2013.

In 2017, Professor Dr. Kinsler establishes an international network, Naevus International. The aim is to foster international collaboration on congenital nevi among dermatologists, researchers, psychologists, and patients. In 2018, she organized an international gathering in Paris, followed by another one in Brussels the next year (picture), and an online webinar in 2022. From a completely different perspective, a new initiative emerged in 2022: the first global congress for rare skin conditions in Paris. This congress proves to be a suitable platform to bring together specialists in congenital nevi, and it will be organized again in two years’ time.

The progress of connecting people whose life is affected by CMN was presented with a poster at Eurordis ECRD 2018.

n March 2017, a significant development took place with the establishment of 24 European Reference Networks (ERNs), focusing on rare or less common intricate medical conditions. Both medical experts, as well as European Patient Advocacy Groups (ePAGs), take place in the ERN-skin. Professor Dr. Veronica Kinsler and Marjolein van Kessel on behalf of Naevus Global, represent CMN in the mosaic working group of ERN-skin. In 2022 ERN-skin organizes the first World Congress on Rare Skin Diseases in Paris, bringing together the experts for CMN. Picture: ERN-skin ePAGs present at Global Skin conference 2023.

Naevus Global is organized by volunteers from national CMN organizations.