Global Cmtc-Ovm Organisation

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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31/10/2025

We would like to know what the best dates are for you regarding our members' conference in 2026 in the Netherlands.

The options are:
1. 23, 24 & 25 October 2026.
2. 30, 31 October and 1 November 2026.
3. 6, 7 & 8 November 2026.

Unfortunately pages don't have the poll option so please reply to this post with your preferred date(s) or share another set of dates.

25/10/2025

After the members' meeting, we kicked off the first session with Dr. van Montfrans and Dr. Versmissen!

24/10/2025

IT'S STARTED! Tonight, the first participants arrived at the members' conference and we had dinner together. Tomorrow's the big day! We're excited!

20/10/2025

🎤 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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