Organization

International umbrella organization

Organization

Naevus Global was originally founded in Marseille, France, at the first international CMN expert meeting in 2013. It was an international federation of advocacy groups dedicated to improving the lives of people affected by congenital melanocytic nevi (CMN) and neurocutaneous melanocytosis (NCM) worldwide through the promotion of both biomedical research and improved access to information. Eleven countries started Naevus Global: Australia, France, Germany, Great Britain, Israel, the Netherlands, Portugal, Spain, the USA, and Macedonia. Through Naevus Global 42 scientific Advisors and 18 support groups were connected.

Naevus Global 2013

The aim of Naevus Global was and (still is) to:

To promote recognition of 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 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, including but not restricted to an international registry.
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.
For the above purposes, maintain a multilingual website with up-to-date and vetted information on various topics relevant to people with CMN and NCM.

Naevus International 2017

In 2017, we restructured international activities in the form of a network called ‘naevus international‘, to provide mutual consultation between patients, scientists, clinicians, psychologists, and other stakeholders.
Yearly international conferences and the website (www.naevusinternational.com) provide information to practitioners about treatment options in the case of melanoma or neurologically symptomatic complications and informs patients with updated medical information. The network stimulates cross-border collaboration for research proposals and continued discussion of consensus guidelines for the management or implementation of an international registry to integrate current national or regional efforts and mapping expertise (e.g. in Europe with the ERN-SKIN) for clinical checkups and experienced plastic surgical treatment.

Naevus Global remains the patient advocacy branch of this network.