CMTC-OVM

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. bit.ly/3KfoepD

🎤 Interview: In this moving interview, Nellemieke shares her daughter’s journey with KTS, 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. bit.ly/4gg8QW2

🎤 Interview: In this touching interview, parents share their experience with their son’s CMTC diagnosis, noticed just 12 hours after birth due to prominent markings on his arm, leg, and torso. Initially mistaken for severe bruising. bit.ly/4ntO3Ru

🎤 Interview: In this heartfelt interview, 22-year-old Matthias shares his journey with a port-wine stain on his face, a condition he’s managed since age 3 with 15 laser treatments. bit.ly/4piCwWK

🎤 Interview: From managing limb length differences and hypermobile joints to undergoing 18 years of laser therapy to reduce facial marks and prevent glaucoma, Katie has embraced her condition with resilience. bit.ly/3VN448Y

Save the dates! De data van de evenementen in 2026 zijn bekend. Noteer alvast in je agenda: 23-24 mei 2026 - Familieweekend - Dordrecht 4 juli 2026 - Efteling - Kaatsheuvel 6-8 november 2026 - Leusden Wil je ook deelnemen? Word lid van CMTC en doe mee! bit.ly/3KQrqZS

🎤 Interview: In this heartfelt interview, a mother shares her experience with her 8-month-old daughter, who has diffuse capillary malformation (DCMO), initially mistaken for CMTC. bit.ly/48cBfKB

In the run-up to Christmas, we, Alexandra, Naomi and Laurens, as departing board members, would like to send you warm Christmas greetings. We look back with gratitude on our time on the board and the wonderful moments we have shared together.

🎤 Interview: 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. bit.ly/3VdrFQ9

🎤 Interview: 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. 💙 bit.ly/3IgYysb

🎤 Interview: In this interview, Dr. Gasparella shares the critical role of multidisciplinary teams in diagnosing and treating vascular malformations. From prenatal consultations to surgical solutions for conditions causing pain or functional limitations. bit.ly/47DNz6u

🎤 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. 📱 bit.ly/42kuCSN

🎤 Interview: 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. 🏥 bit.ly/4maGwFZ

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

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!

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!

The next phase of our MENTAL HEALTH project is here & WE NEED YOUR HELP PLEASE:   Could you spare a little time to fill out our survey: uwe.eu.qualtrics.com/jfe/form/SV_ea…   Thank you so much for your help Mandy & the GoPI3Ks team. @CAR_UWE those tagged could u pls can you share, thanks ☺️

🎤 Interview: Understanding “living loss”: The Chronic Grief of Parenting a Child with a Rare Condition 💔 In this moving video, Johannes explores "levend verlies", the ongoing grief that comes with raising a child with a chronic condition like CMTC. bit.ly/3V7mYY6

🌿 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!

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