Connecting people with Congenital Melanocytic Naevi worldwide

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.

Activities

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Our themes

Information

CMN (Congenital Melanocytic Nevus) can turn your life upside down. The diagnosis and treatment of giant birthmarks require physical, emotional, and mental endurance. As part of Naevus Global, we understand this better than anyone else.

SUPPORT

Naevus Global strives for a better quality of life and improved quality of care for individuals dealing with giant birthmarks. Connecting to other people will help you find the best care. We try to connect you with support groups as close to you as possible.

ACTIVITIES

Naevus Global connects to international organizations. Representing Congenital Melanocytic Naevi at international conferences will raise awareness and stimulate healthcare providers, researchers, and policymakers to improve healthcare.

Personal stories

Living with

It was not my choice or desire to be born with CMN. But I have a choice of how to react to it and how to live my life

Julianna Yussef

Treatment

“I had 12 surgeries, we don’t know how many I’m going to have. We think I might have six more.”

Chloe, treatment with tissue expanders.

Complications

“He does not stop sharing his smiles and positivity with the world.”

Erez has neurological complications.

Your support is powerful

To optimize medical care and avoid stigmatization for individuals with CMN and their environment.

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REGISTER AS A MEMBER

Register your CMN patient organization and learn about international activities. Or become a patient advocate for your country when there is no CMN organization.

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CONTRIBUTE WITH A DONATION

Do you want to make a concrete contribution to improving the quality of life for people with Congenital Melanocytic Naevus? Making a donation to our organization increases the (global) visibility.

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Subscribe to our newsletter

Register for our newsletter and learn about the latest news and activities of Naevus Global. It can inspire you to become involved as a patient advocate or representative.

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The NNN newsletter is out!

Reports from the family event, Naevus Global, and the #WCRSD2024.

OCOMEN is seeking your input for questionnaires on quality of life for CMN!

📩 Check: http://bit.ly/NNNnieuwsbrief0624

#NNNnews #NaevusGlobal #OCOMEN #CMN

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Ongeveer 1 miljoen Nederlanders hebben een zeldzame aandoening. Op 3 juni is RARE-NL gestart. RARE-NL richt zich op onderzoek naar de behandeling van zeldzame ziekten en op het ontwikkelen van bestaande geneesmiddelen voor nieuwe indicaties 👇

Alistair Sveter, born with Neurocutaneous Melanosis, faces severe health challenges. His parents, Tessa and Ryce, have been struggling after Ryce lost his job and their car broke down. Tonight at 6:00, Bill Spencer helps get their car fixed.

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