Global Cmtc-Ovm Organisation

25/10/2026

✨ 𝗦𝗜𝗔𝗩 𝗰𝗼𝗻𝗴𝗿𝗲𝘀𝘀 𝟮𝟬𝟮𝟲
We look back on a great week in Argentina where our global patient community was represented! 💙🌍

📅 15–16 October 2026
📍 Hotel NH Buenos Aires City, Argentina

Josefina, our Patient Advocate, worked hard at the congress to share information and connect with the medical world on behalf of CMTC-OVM. 🇦🇷

A few highlights from the trip:
🩺 Meeting with nearly 300 doctors and medical specialists from all over the world
🔬 Learning about the latest updates on molecular genetics and new drug therapies
🍪 Sharing our famous Dutch treats
👨‍⚕️ Connecting with international experts

We are very grateful for the dedication of our PA's to keep improving patient care worldwide. 🩺🤝

12/10/2026

29/09/2026

✨ 𝗖𝗠𝗧𝗖-𝗢𝗩𝗠 𝗪𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲 𝗠𝗲𝗺𝗯𝗲𝗿 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝟮𝟬𝟮𝟲
This is a reminder for our annual conference!

The programme includes sessions on vascular malformations, mental wellbeing, European Reference Networks, AI in healthcare and practical photography with your smartphone.

But the conference is about much more than presentations. There will be a welcome reception with Dutch treats, creative activities and workshops, chair massages, our interview series and a dinner buffet on Saturday evening. 💙
The conference is also hybrid, allowing members to join selected speaker sessions online.

We look forward to seeing you there!

📅 6–8 November 2026
📍 Leusden, The Netherlands

Enroll via:
https://www.cmtc.nl/.../leden-conferentie-2026.../

10/09/2026

🇳🇱✨ 𝗖𝗠𝗧𝗖-𝗢𝗩𝗠 𝗪𝗼𝗿𝗹𝗱𝘄𝗶𝗱𝗲 𝗠𝗲𝗺𝗯𝗲𝗿 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝟮𝟬𝟮𝟲

Our annual worldwide member conference is coming up! From 6–8 November 2026, we will welcome members from around the world to Landgoed ISVW in Leusden, The Netherlands.

It will be a weekend of meeting each other, sharing experiences and learning together.

The programme includes sessions on vascular malformations, mental wellbeing, European Reference Networks, AI in healthcare and practical photography with your smartphone.

But the conference is about much more than presentations. There will be a welcome reception with Dutch treats, creative activities and workshops, chair massages, our interview series and a dinner buffet on Saturday evening. 💙

The conference is also hybrid, allowing members to join selected speaker sessions online.

We are looking forward to another weekend where patients, families, volunteers and professionals from different countries can come together as one community. 🌍

📅 6–8 November 2026
📍 Leusden, The Netherlands

We hope to see many familiar and new faces in November!

Enroll via:
https://www.cmtc.nl/leden/evenementen/leden-conferenties/nederland/leden-conferentie-2026-informatie-en-registratie/

23/08/2026

🇺🇸✨ 𝗜𝗦𝗦𝗩𝗔 𝟮𝟬𝟮𝟲

From May 19–22, around 700 participants gathered in Philadelphia for the annual ISSVA congress , bringing together doctors, researchers and patient organisations from around the world.

For CMTC-OVM, ISSVA is always an important opportunity to learn about new developments, meet professionals in the field and represent the patient perspective.

One of the developments we are particularly pleased about is the growing role of patient organisations within ISSVA. The new Patient Support Committee will help strengthen patient representation and create a bridge between patients and medical professionals.

There was also increasing attention for the psychological and psychosocial impact of vascular anomalies. Although ISSVA is a scientific organisation, it is encouraging to see more recognition that the visible and invisible effects of a vascular anomaly both matter.

We also attended a special session organised by Relay, where the first results of their clinical trial were presented. The results look promising and may be an interesting development for patients with PROS.

And then, of course, there was our stand! Our banner, clogs, information materials, stroopwafels and Limburg chocolate once again helped us connect with many doctors and other participants. 🇳🇱

The congress also included a beautiful tribute to Dr. John Butler Mulliken, one of the founders of the vascular anomalies field and of ISSVA.

We came home with new contacts, new information and lots to follow up on. Another valuable few days for CMTC-OVM. 💙

International Society for the Study of Vascular Anomalies - ISSVA

17/08/2026

🇫🇷✨ 𝗪𝗖𝗥𝗦𝗗 𝟮𝟬𝟮𝟲 - 𝗩𝗲𝗿𝘀𝗮𝗶𝗹𝗹𝗲𝘀

Three days, countless conversations, new connections and a lot to take home. 💙

For us, WCRSD was about more than sharing what we do. It was about listening, learning and talking openly about what life with a rare disease really means.

A highlight was seeing our President, speak about mental wellbeing in rare disease.

The numbers are sobering:
🧠 19% have experienced suicidal thoughts
💼 70% have reduced or stopped working
🤝 More than half experience social isolation

Behind every statistic is a person and a family. That’s why mental wellbeing deserves to be part of rare disease care — not an afterthought.

We’re leaving Versailles with new ideas, new friends and plenty of motivation for what comes next. 💙

International Alliance of Dermatology Patient Organizations - GlobalSkin
Naevus Global
Huid Nederland
Cmtc-Ovm patiëntenorganisatie Nederland
NVDV - Nederlandse Vereniging voor Dermatologie en Venereologie

14/08/2026

🎢💙 𝗖𝗠𝗧𝗖-𝗢𝗩𝗠 𝗙𝗮𝗺𝗶𝗹𝘆 𝗗𝗮𝘆 𝟮𝟬𝟮𝟲

What a wonderful day at the Efteling! 🇳🇱✨

On 4 July, 88 participants from the Netherlands, Belgium and Germany came together for our annual Family Day. A day full of fun, laughter, conversations and making new memories.

The Efteling was the perfect place for our community, with something for every age. Families enjoyed the attractions, shared stories, met new members and reconnected with familiar faces.
The best moments often happened in between the activities; during lunch, while walking through the park, or even while waiting in line. These small moments of connection are what make our CMTC-OVM family so special. 💙

Read more about the day: https://www.cmtc.nl/blog/2026/07/18/familiedag-2026-efteling/

📸 Take a look at some of our favourite moments!

14/08/2026

🌿💙 𝗖𝗠𝗧𝗖-𝗢𝗩𝗠 𝗙𝗮𝗺𝗶𝗹𝘆 𝗪𝗲𝗲𝗸𝗲𝗻𝗱 𝟮𝟬𝟮𝟲

What a wonderful weekend in the beautiful Biesbosch! 🇳🇱✨

On 23 & 24 May, families from different countries came together for our annual Family Weekend. There was adventure, laughter, teamwork and — most importantly — plenty of time to connect with each other.

From being out on the water and exploring nature to fun challenges and creating new memories, every family could enjoy the weekend in their own way.

It was wonderful to see new members become part of our CMTC-OVM family and to see existing friendships grow even stronger. 💙
Thank you to all families who joined us and helped make this weekend so special!

Read more about the weekend: https://www.cmtc.nl/blog/2026/06/17/familie-weekend-2026/

📸 Swipe to see some of our favourite moments!

04/08/2026

The video of our Family Weekend 2026 is available:

04/07/2026

Our international Family Day has started in the Efteling!