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Naevus Global

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Versailles
Naevus Global

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International federation of patient groups supporting all people with the large or giant congenital melanocytic nevus (naevus) around the world.

22/08/2026

Amazing! Today Nevus Outreach Kenya walks together for awareness,support and inclusion🙌

17/08/2026

WCRSD Versailles 2026

28/07/2026

💙 From Europe to Orlando! 🇧🇪✈️🇺🇸

From 26–28 July 2026, Nevus Netwerk Nederland and Naevus Belgium are proud to be attending the Nevus Outreach Inc Conference & Reunion in Orlando, Florida.

Over the next three days, patients, families, advocates, healthcare professionals, and researchers from across the United States and around the world will come together to learn, connect, and inspire one another. Together, we continue building a stronger global CMN community through collaboration, education, and shared experiences.

We are honored to represent our Naevus Global European community, strengthen international partnerships, and exchange knowledge that will help improve care and support for everyone living with CMN.

💙 We gather.
🧡 We connect.
💙 We amplify.

Here's to three unforgettable days of learning, friendship, and hope.

13/07/2026

TRUE STORY | Name & Photo Changed to Protect Her Identity

“The story you’re about to read is based on the real experience of one of our members. Her name and photo has been changed to protect her privacy.”

“My name is Amina.”

I wasn’t born with a disease.

I wasn’t born with something contagious.

I was simply born with a Congenital Melanocytic Nevus (CMN) covering part of my face.

But from a very young age, I learned that the hardest part of living with CMN wasn’t the birthmark itself.

It was the people.

Whenever there was a family gathering, I would quietly hope that this time would be different.

Sometimes, I wasn’t invited at all.

Other times, I was told, “Wear a hoodie.”

“Put on a cap.”

“Don’t let people see your face.”

They said it was for the family’s image.

They said my face would make people ask questions.

They said I brought shame.

So I learned to hide.

I smiled when I wanted to cry.

I avoided mirrors because I had started believing what they believed—that maybe I really was something to be ashamed of.

No child should ever grow up feeling that way.

The truth is, CMN is not contagious. It is not a curse. It is not a punishment from God. It is a rare condition that develops before birth.

What hurts people living with CMN the most is not always the birthmark.

It’s being rejected.

It’s being stared at.

It’s being excluded.

It’s hearing hurtful words from the very people who should make you feel safe.

Today, I have found a family in Nevus Outreach Kenya—people who don’t ask me to hide, who don’t see my birthmark before they see me, and who remind me that I am worthy of love, respect, and belonging.

My story is real.

And sadly, it is not unique.

There are many children, teenagers, and adults living with CMN who carry emotional scars caused by stigma, rejection, and discrimination.

Today, we ask you to help us change that.

If you are a parent, love your child openly.

If you are a relative, protect them instead of hiding them.

If you are a friend, stand beside them instead of looking away.

No one chooses how they are born.

But every one of us can choose how we treat others.

At Nevus Outreach Kenya,we believe that every person living with CMN deserves to be seen, accepted, and loved—not despite their birthmark, but with it.

Please share this story. Someone out there needs to know they are not alone.
Also tag a nevus owner to remind them that they’re not alone🙏

06/07/2026

💙 On 1–2 July, Anne Dekerk – psychologist and mother of a daughter with CMN – attended the British Association of Dermatologists conference on behalf of Naevus Belgium, Nevus Netwerk Nederland, and Naevus Global.

She participated in sessions focused on psychodermatology, a field that explores the interaction between skin conditions and mental health. This is especially relevant for people living with Congenital Melanocytic Naevi, where psychological wellbeing is closely linked to dermatological care and lived experience.

The conference also highlighted the important presence of Caring Matters Now, raising awareness of CMN and working to educate dermatologists about the condition. Their efforts help improve understanding, promote earlier recognition, and strengthen knowledge across the medical community.

By sharing insights and strengthening international collaboration, we take another step forward in improving care, support, and awareness for individuals and families affected by CMN.

05/07/2026

🌍 At the World Congress on Rare Skin Diseases 2026, physicians, researchers, and patient organizations from around the world came together to share knowledge on rare skin diseases, the latest research developments, and ways to improve patient care. For organizations representing people with Congenital Melanocytic Nevi (CMN), attending this congress was invaluable.

💙 Naevus Global (NNN & Nävus Netzwerk) had a dedicated exhibition booth where visitors could explore a wide range of educational resources, including Tous en Piste, Didi the Wolf and the Starry Tattoos, Steven Bouris' book How Do You C Me Now, the Patient Journey booklets, and various brochures and information materials.

💙 Patient representatives also delivered presentations to healthcare professionals, highlighting the profound impact that living with a rare skin condition can have on patients' daily lives, self-confidence, and mental well-being.

💙 In addition, Naevus Global participated in an inspiring GlobalSkin session focused on empowering patient organizations and strengthening their influence on healthcare policy, research, and patient care.

Together, we continue to build awareness, share knowledge, and strengthen the voice of the global CMN community. 💙

Nevus Netwerk Nederland: Emile, Quinten de Vries, Nävus Netzwerk Deutschland e.V.: Benjamin Blume, Caring Matters Now, Association ANNA, Steven Bouris ERN-Skin, International Alliance of Dermatology Patient Organizations - GlobalSkin

01/07/2026

Just finished 'DIFFERENT: a powerful story about self-acceptance by Steven Bouris, and I couldn't put it down.

This is a deeply honest and inspiring story about growing up with a visible birthmark and the lasting impact of shame, insecurity, and ultimately, healing. What touched me most is that it's not just about living with a visible difference—it's about emotions that so many of us can relate to.

A powerful reminder that healing begins when we face our own story. Highly recommended. 💙📖

https://naevusglobal.nevusnetwerk.nl/a-powerful-story-about-self-acceptance/

Read more and order: https://stevenbouris.com.au/

28/11/2025

AND THEY'RE OFF! 🏔️❄️🥾
Today marks the start of an epic adventure as Nick & Phil head to Mexico for Continent 6 of the Caring Matters Now 7 Continents Fundraising Challenge!

They’ll be taking on three iconic volcanoes; Malinche, Iztaccíhuatl, and Pico de Orizaba. They will be battling extreme altitude, freezing temperatures, and brutal terrain along the way.

They're doing this for their sons, James and Callum, who were both born with Congenital Melanocytic Naevus (CMN). This is their way of giving back to Caring Matters Now, a charity that has supported them and so many others through their journeys.

Let’s rally behind them as they push their limits for this incredible cause. Every donation makes a difference. 💙

👉 Support Nick & Phil here: https://caringmattersnow.enthuse.com/cf/cmn-pico-de-orizaba-2025

17/09/2025

"Small or giant, multiple or few.
Smooth or hairy, some visible too.
Replaced with a scar, or growing with their skin.
Some were even inside, hiding within.”

Taken from our very first Children's book, 'Didi, the Wolf and the Starry Tattoos', this heartfelt story educates readers that Congenital Melanocytic Naevus (CMN) comes in many shapes, sizes and forms - making each person unique. ✨

Find out more about the book and how to order your copy when the pre-sale begins on Sunday, 28th September: https://www.caringmattersnow.co.uk/awareness/childrens-storybook/

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