Global Cmtc-Ovm Organisation

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.



@

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.



@

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...

03/03/2026

Arianne Faro (USA) wrote a blog post about the many surgeries and hospitalizations due to Klippel-Trenaunay syndrome and the impact this has had on her mental health.

She writes: "There's a quote I really love: 'It's always darkest just before the dawn.'
That resonates deeply with me, because I've found this to be true many times over. I look forward to my dawn finally breaking."

Thanks for sharing, Arianna, keep your spirits up! We wish you a good recovery 💛

Hello there, For those who have not read any of my previous posts, my name is Arianna Faro and I have Klippel-Trenaunay syndrome. I was diagnosed at birth, and since then I have had over 75 hospitalization due to various infections and operations. Life has not been easy for me by any any means, but....

01/03/2026

🎤 Interview: Nele’s Story: Embracing Her Unique “Biotattoo” with CMTC ⭐

Meet Nele, Martina's 12-year-old star who was born with CMTC (Cutis Marmorata Telangiectatica Congenita), visible as beautiful marbling on her leg, arm, and torso. In this video, Martina shares the journey from the initial confusion at her birth—when doctors were unsure of her condition—to a dermatologist’s diagnosis, thanks to a medical database. 💪

Nele’s confidence shines through as she proudly calls her CMTC her “biotattoo,” embracing her uniqueness despite challenges like easy bleeding and scarring. She’s never been teased, only met with curiosity, which she handles with grace. Her strength inspires us all! Join us in raising awareness for rare conditions like CMTC.

Share this post, comment with a ⭐ to celebrate Nele’s spirit, or tag someone who inspires you to embrace what makes you special. Let’s show kids like Nele they’re never alone!



@

28/02/2026

And the global Rare Disease Day has started in the Netherlands!

28/02/2026

February 28th 2026 - Rare disease day

Did you know that over 300+ million people worldwide are diagnosed with a rare disease?

It can feel lonely and overwhelming at times, that is why patient organizations like ours are so important.

At CMTC-OVM we organize multiple events per year to meet each other and gain knowledge and exchange experiences.

Experts, patients and family members, all united around vascular malformations.

Want to join? Become a member for only 25 euros per year. We welcome you from anywhere in the world!

24/02/2026

The biotech company Relay has developed an experimental drug for people with vascular malformations. This medication targets people with a PIK3CA mutation. The company now plans to launch clinical trials worldwide. Relay will host a webinar on March 5, 2026, at 7:00 PM UTC+1. Those in the target audience can register before March 3.

For more information:

Nieuwe ontwikkeling: RLY-2608

20/02/2026

🎤 Interview: Stefanie & Oriols Journey with Júlia’s CMTC Diagnosis 🌈

Meet Júlia, Stefanie Gebele & Oriol Tomas' vibrant 7-year-old with a “magic leg”! In this video, Stefanie & Oriol share their family’s experience navigating Júlias mild CMTC (Cutis Marmorata Telangiectatica Congenita) diagnosis, from the initial uncertainty in the hospital to finding a supportive community.

Despite challenges like prolonged bleeding and annual checkups, Júlia thrives—playing judo, running, and enjoying life without limitations. The CMTC association has been a lifeline, connecting their family with experts and families who understand. Stefanie & Oriol are grateful for the support and the friendships Júlia has formed with other kids like her.

Let’s raise awareness for rare conditions like CMTC! Share this post, drop a 💪in the comments, or tag someone who inspires you to keep going. Together, we can show kids like Júlia they’re never alone.



@

13/02/2026

Some patients with CMTC also experience joint hypermobility, often as part of additional symptoms. Our Canadian member Katie Allen wrote a blog post about her experiences with hypermobility, physiotherapy, and surgery.

An aspect of my CMTC that I don’t discuss very often is the hypermobility in my joints, especially on my impacted side. Both sides of my body have fairly mobile joints; however, my affected side is significantly more problematic. A notable visual difference in the mobility of my sides is that, whi...

10/02/2026

🎤 Interview: Sharing Magdalénas Journey with a Rare Condition 👋

In this heartfelt video, Magdaléna Kohutová opens up about living with a suspected case of CMTC (Cutis Marmorata Telangiectatica Congenita), a rare vascular condition, without a confirmed diagnosis. From physical differences like a shorter arm and leg to navigating childhood challenges and societal comments, Magdaléna learned to embrace her unique journey. 💪

Join Magdaléna as she share connecting with the CMTC community has given hope, support, and a path to finding answers. Her goal? To help others with rare conditions feel less alone and to raise awareness, especially in places like Slovakia and the Czech Republic where information is scarce.

💙 Let’s spread awareness and support for those with rare diseases! Watch Magdalénas story, share your own, or tag someone who inspires you to keep going despite challenges. Together, we can make a difference!



@