Naevus Global is an international team of deputies from national patient advocacy groups and individual patient advocates dedicated to improving the lives of people affected by congenital melanocytic nevi (CMN) and possibly neurocutaneous melanocytosis (NCM) through the promotion of both biomedical research and improved access to information.
The global non-profit NG organization is the central knowledge center to find easily and quickly reliable information, patient experiences and patient journey in multiple languages to support patients with CMN and NCM and their families.
- Main Activities
- To promote recognition of the rare diseases, large/giant congenital melanocytic nevus (CMN) and neurocutaneous melanocytosis (NCM), among the general public, medical practitioners, and national and international health advocacy organizations.
- To develop and share information related to CMN and NCM among the member associations in order to maintain consistency and quality of said information.
- To promote worthwhile biomedical research and research to improve the quality of life held to international standards of scientific significance.
- To promote centralized access to, and management of, data and biological samples useful to the biomedical research of CMN and NCM.
- To identify and assist affected children in countries without structured medical care for CMN, in part by fostering new associations serving additional parts of the world.
- To maintain a multilingual website, to support the activities mentioned above, with up-to-date and vetted information on various topics relevant to people with CMN and NCM.
- Connect people with CMN, share their stories and patient journeys.
- To participate and represent people with CMN in networks like Naevus International, international rare disease organizations, international skin federations.