Global Cmtc-Ovm Organisation

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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17/10/2025

🌿 Member Conference 2025: Willemijn Bos reveals the four layers of your skin: physical, mental, emotional, and energetic. Your skin tells the story your heart doesn’t express—blockages, stress, or old wounds? It’s time to transform them for more balance and joy!

❗Register quickly for the 2025 annual member conference (October 24-26) and be inspired by this captivating presentation! Don’t miss this unique opportunity—sign up now! Link is in the comments!

14/10/2025

An important request from the U.K charity GoPI3Ks.
We have a survey that we are asking those living with PROS (any subtype), parents/guardians & teenagers aged 13 & over to fill out:

https://uwe.eu.qualtrics.com/jfe/form/SV_ea1F2dSmOn5S2SG

The U.K charity GoPI3Ks who support those living with PROS are undertaking a study to look in to the psychological burden of living with PROS.

The next phase of their MENTAL HEALTH project is here & THEY NEED YOUR HELP PLEASE:

Your help will help GoPI3Ks to produce vital resources which will help those living with & affected by PROS now & in the future.

Plus you could win a £20 voucher.

Deadline is 26th October

Thank you so much for your help
Mandy & the GoPI3Ks team.

The most powerful, simple and trusted way to gather experience data. Start your journey to experience management and try a free account today.

13/10/2025

⭐ Member Conference 2025: Dr. Bibi van Montfrans and Dr. Jorie Versmissen will kick off the conference with a presentation on vascular malformations and the WEVAR team from Erasmus MC. Especially fascinating for those in the diagnostic process, curious about the team, or considering a second opinion!

❗Register quickly for the 2025 annual member conference (October 24-26) and be inspired by this captivating presentation! Don’t miss this unique opportunity—sign up now! Link is in the comments!

10/10/2025

🎤 Interview: Embracing “Angel Kisses” with CMTC ⭐

In this powerful video, Eden shares her journey living with CMTC (Cutis Marmorata Telangiectatica Congenita), a rare condition that colors Edens skin with unique patterns on her arms, legs, and chest. From childhood curiosity to finding strength in her individuality, Eden turned her experiences into a passion for storytelling through film. 🎬

Thanks to the incredible support of CMTC-OVM, Eden connected with a community that understands, and is now directing Paper Tiger, a film inspired by her story, to raise awareness about rare diseases. Join Eden in celebrating uniqueness and resilience! Share this post, drop a 💜 in the comments, or tag someone who inspires you to embrace what makes you special.

🎥 Paper Tiger will screen at the BFI in London in the summer of 2026, supported by CMTC-OVM. Let’s shine a light on rare conditions together!



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05/10/2025

🌍 Register now for our annual global member conference 2025! 💛 October 24-26 in Leusden (The Netherlands). Enjoy inspiring speakers, workshops, a dinner buffet, and more. Hybrid participation available (online or on-site). Don’t miss out! Link is in the comments!



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