Global Cmtc-Ovm Organisation

20/05/2026

A special intermezzo at the conference

19/05/2026

We are ready for the conference in Philadelphia!

17/05/2026

On the way to the conference in Philadelphia in the USA.
This is THE medical conference on vascular malformations.
Also having a booth.

20/04/2026

🎤 Interview: Dr. Paolo Gasparella on Tackling Vascular Malformations in Pediatric Surgery 💉

In this insightful interview, pediatric surgeon Dr. Paolo Gasparella shares the critical role of multidisciplinary teams in diagnosing and treating vascular malformations like CMTC. From prenatal consultations to surgical solutions for conditions causing pain or functional limitations, his team in Graz works to provide accurate diagnoses and tailored treatments.

Dr. Paolo Gasparella highlights the risks of misdiagnosis and the exciting potential of artificial intelligence in improving diagnostic accuracy. Let’s advocate for better care for those with rare conditions! Share this post, comment with a 💪 to support medical advancements, or tag someone who inspires you to push for progress.



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10/04/2026

🎤 Interview: Dr. Marije van Dalen on Empowering Teens with Chronic Conditions. 📱

In this inspiring interview, Dr. Marije van Dalen discusses her work developing the Grow It! app, a digital tool designed to help teenagers (ages 10-18) with chronic conditions like CMTC navigate their emotional and social challenges. From tracking moods to offering coping tips like baking a cake or chatting with friends, the app empowers teens to understand and manage their emotions in their own environment. ⭐

With mental health challenges on the rise and long healthcare waiting lists, this app is a game-changer, reducing the need for frequent hospital visits. Currently in research trials with promising feedback (rated 7.4/10 by teens!), Grow It! aims to be widely available soon. Let’s support innovative solutions for youth! Share this post, drop a 💙 in the comments, or tag someone who’d love to hear about this.



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03/04/2026

Did you check out the program for our international family weekend in The Netherlands (May 23-24th)? Registration is open now, we hope to see you there!

You can register on our website until the 17th of May.

On Saturday, May 23, and Sunday, May 24, 2026, we will be hosting our third international Family Weekend in the Netherlands. Below you will find the program and registration details for this weekend. This event is for members only, who must also have paid their annual membership fee. We request a pe...

01/04/2026

🎤 Interview: Dr. Bibi van Montfrans on Diagnosing Vascular Malformations & the Power of Patient Advocacy 🏥

In this insightful interview, Dr. Bibi van Montfrans shares the challenges of diagnosing rare conditions like CMTC, where delays can leave patients searching for answers for years. She highlights the relief a correct diagnosis brings and the vital role of patient associations in providing support, community, and a voice for those with vascular malformations. 💙

Dr. van Montfrans also emphasizes the need for mental health support and the growing inclusion of patient advocates at medical conferences to shape better care. Let’s amplify the patient voice! Share this post, comment with a ⭐ to support rare disease awareness, or tag someone who inspires you to advocate for change.



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31/03/2026

The program for our Family Weekend has been announced and registration is now open!
Don’t wait too long! Registration closes on May 17.

https://www.cmtc.nl/en/members/events/family-weekends/family-weekend-2026-information-and-registration/

20/03/2026

🎤 Interview: Understanding “living loss”: The Chronic Grief of Parenting a Child with a Rare Condition 💔

In this moving video, Johannes explores "levend verlies" (living loss), the ongoing grief that comes with raising a child with a chronic condition like CMTC. It’s the constant ache of unfulfilled hopes, the worry about the future, and the emotional weight that lingers like a pebble in your shoe. This is a reality for many parents, like those caring for a child for 40 years, still seeking connection and answers.

But there’s hope in sharing and support. Whether it’s talking to a professional, confiding in a friend, or expressing your emotions through writing, singing, or even shouting from a bridge—let it out.

Stay connected. You’re not alone. Let’s raise awareness about the emotional journey of rare diseases. Share this post, comment with a 💖 to show support, or tag someone who needs to hear this. Together, we can build a community of understanding and strength.



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18/03/2026

Did you know we created a website specifically for young adults with CMTC and other vascular anomalies? Check it out and let us know what you think!

When you grow up with CMTC or another vascular anomaly, a lot changes. Not only in your body, but also in your mind, your social life, and the way you look at the future. You may have questions about treatments, self-confidence, relationships, work, or studies. And you may notice that information in...