Global Cmtc-Ovm Organisation

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.



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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!



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08/02/2026

Beautiful images of wonderful encounters between patients, families, and experts during our family days and weekends.

Sharing knowledge, exchanging experiences, and peer support. Extremely important for people with a rare disease!

-OVM ”

01/02/2026

🎤 Interview: Nellemieke’s Journey with Her Daughter’s Klippel-Trenaunay Syndrome 💙

In this moving interview, Nellemieke shares her daughter’s journey with Klippel-Trenaunay syndrome, initially misdiagnosed as CMTC. Diagnosed at birth due to visible spots on her left leg, her daughter now manages pain and oedema with compression stockings and faces limitations in sports and long walks. Despite these challenges, she thrives in daily activities like biking and school, though social situations can be tough due to others not taking her condition seriously. 😑

The CMTC-OVM community has been a lifeline, offering connection and understanding when medical systems fall short. Nellemieke’s advice to parents? Focus on your own coping in the early years and make space for your child’s experience as they grow. Let’s raise awareness for rare conditions like Klippel-Trenaunay! Share this post, drop a 💙 in the comments, or tag someone who inspires you to stay resilient.



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23/01/2026

Hurray! Today marks 29 years for CMTC-OVM.

Did you know you can join our community for people with vascular malformations from anywhere in the world?

At CMTC-OVM you can:
👪 meet other people with vascular malformations and their families
🌍 stay up-to-date with treatments and other information about specific conditions
👜 meet with specialists
😁 join our family days and weekends in The Netherlands

10/12/2025

🎤 Interview: Tessa Schiethart’s Journey with Sturge-Weber Syndrome 💛

In this powerful interview, Tessa shares her experience living with Sturge-Weber syndrome, a rare condition marked by a facial port-wine stain, glaucoma, and vision loss. Despite challenges like blindness in one eye and a traumatic laser treatment mishap, Tessa’s strength shines through. She’s learned to embrace her visible difference, confidently addressing stares and questions with the support of her family and friends. 💪

Now a psychologist focusing on appearance and chronic illness, Tessa uses her story to inspire others, emphasizing the value of patient associations for connection and support. Let’s celebrate resilience and community! Share this post, drop a 💛 in the comments, or tag someone who inspires you to embrace their uniqueness.



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01/12/2025

🎤 Interview: Edith Raap & Minke Verdonk on Navigating Living Loss 💙

In this heartfelt interview, developmental psychologist Edith Raap and orthopedagogue Minke Verdonk dive into "living loss," the recurring grief parents experience when raising a child with a disability like CMTC. It’s not just sadness—it’s a mix of helplessness, frustration, and even shame that can resurface unexpectedly. Yet, they emphasize that these feelings are a normal response to an abnormal situation.

Through their podcast, lectures, and research, they’re giving parents space to express this ambivalence—loving their child deeply while grappling with loss. Patient associations play a vital role in fostering connection and relief. Let’s normalize these conversations! Share this post, drop a 💙 in the comments, or tag someone who needs to hear they’re not alone.



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24/11/2025

The report of our international members' conference of the 24th, 25th and 26th of October 2025 is available.

Our conference in 2026 is scheduled on the 6th, 7th and 8th of November 2026.

Around 65 people participated in our conference (a small number joined online from Canada and Slovakia). Participants came from Belgium, Germany, England, and the Netherlands. Quite a few members turned out to be on vacation, which meant we had fewer participants than expected. We will approach this...

20/11/2025

🎤 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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10/11/2025

🎤 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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01/11/2025

🎤 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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