Global Cmtc-Ovm Organisation

28/09/2025

🌿 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!

24/09/2025

We are excited to announce the launch of a new Rare Barometer survey on what helps people live with a rare or undiagnosed condition!
The survey is available in 25 languages, worldwide, to all people living with a rare or undiagnosed condition and to their family members. It takes about 25 minutes to fill and closes on November 16th.
It includes questions such as how people cope with daily stress, which support they can rely on, or how they manage to learn, work, and contribute to their community while living with a rare or undiagnosed condition. The results will help us advocate for tailored solutions for people with rare or undiagnosed conditions and their families to live life to engage meaningfully in their daily activities. Survey results will be shared with participants, patient organisations, decision-makers and the general public.

Take the survey!
✍️You can take the survey in 25 languages at:

http://www.lesphinx.eu

23/09/2025

⭐ 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!

22/09/2025

European Research Project NARRATIVE Launched

The new project NARRATIVE of the VASCA Working Group (of which CMTC-OVM is a member) within the European Reference Network VASCERN aims to gain more knowledge about the course and treatment of rare vascular anomalies.

Vascular anomalies are rare and sometimes complex and difficult to treat. NARRATIVE is establishing a European registry to collect data on disease progression, quality of life, and genetic backgrounds.
The goal: better therapies, more targeted diagnostics, and improved quality of life.

Who can participate?
Anyone with a vascular malformation (blood vessel disorder such as CMTC, DCMO, or Klippel-Trenaunay). All ages – including children – are invited to participate.

The study will start in Germany, initially in Freiburg. If you are being treated there, your experiences and data can help move this research an important step forward.

By participating, you support:
1. A better understanding of these rare diseases.
2. The development of personalized treatments.
3. New therapies for future generations.

More information: https://vascern.eu/group/vascular-anomalies/narrative-project/

Interested?
Please contact our organization at president@cmtc.nl

The NARRATIVE project is a 36-month EU project from VASCERN-VASCA studying vascular anomalies, patient outcomes, and quality of life across 1,200+ participants.

21/09/2025

🌍 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!



@

20/09/2025

🎤 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.



@

18/09/2025

Paris

16/09/2025

💍 Members’ Conference 2025: What if you’d rather do something else?

During the 2025 Members’ Conference, we’re putting extra focus on the informative program while also offering other activities. Not in the mood to attend the presentation by Dr. Bibi van Montfrans and Dr. Jorie Versmissen on vascular malformations and WEVAR? Join the Silver Stackable Ring Workshop instead!

❗Register quickly for the annual 2025 Members’ Conference (October 24-26)



@

15/09/2025

We are fully engaged in organizing our Members’ Conference, taking place from October 24–26 in the Netherlands.

This year, we are offering even more than in previous years:

• Three inspiring speakers covering different topics (in multiple languages).

• Three special workshops in addition to the creative workshop.

• One free overnight stay per member from Saturday to Sunday, including a luxurious breakfast buffet.

• A special Sunday morning program in nature.

Please note: registration for the extra workshops is on a first-come, first-served basis, and we are seeing a lot of interest already.

So … don’t wait—sign up quickly for our Members’ Conference and indicate your workshop preferences! FULL = FULL!

Information and registration: https://www.cmtc.nl/en/members/member-conferences/netherlands/members-conference-2025-information-and-registration/

10/09/2025

🎤 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!



@