Our help guide for parents with a child with a rare condition at different stages of life is available in several languages via bit.ly/3NGoLPq! #ERNeu #EADV #PROS #VASCA #VASCERN #PIK3CA #vascular #VenousMalformations #KTS #CLOVES #DCMO #ERN-Skin #CMTC #IADPO

Happy Patient Advocate Monday, everyone! 🎉 We're excited to introduce you to Tonje all the way from Norway! 🇳🇴✨ Want to learn more about Tonje and our awesome Patient Advocacy Program? Check it out on our website! 👉 bit.ly/3u1VTbB

Our Guide for elementary school teachers who have a student with vascular malformation in the classroom is available in several languages via bit.ly/3DlcDP7! #ERNeu #PROS #VASCA #VASCERN #PIK3CA #vascular #VenousMalformations #KTS #CLOVES #DCMO #ERN-Skin #CMTC #IADPO

Patient advocate Thursday! Please meet Silke from Austria! Read all about Sike and our Patient advocacy program on our website: bit.ly/3u1VTbB #EADV #PROS #VASCA #VASCERN #ISSVA #ERN-Skin #CMTC #CMTCOVM #DEDUVEINSTITUTE #IADPO

May we be your organization's patient organization? Become a member and help us help you and others! Membership is € 35 per calendar year and often claimable from your health insurance. Become a member via: bit.ly/3cMN3ZY

Patient advocate Monday! Please meet Dominika from Poland! Read all about Dominika and our Patient advocacy programm on our website: bit.ly/3u1VTbB #IRDiRC #DareToThinkRare #PROS #EURORDIS #vascern #EJPRD GlobalSkin Patiëntenfederatie #RareDisease @rarediseasesint #RareDiseaseDay

Our brochure about Practical tips for a conversation with your healthcare provider is available in different languages via bit.ly/3hbNmze! #ERNeu #EADV #PROS #VASCA #VASCERN #PIK3CA #vascular #VenousMalformations #KTS #CLOVES #DCMO #ERN-Skin #CMTC #CMTCOVM #IADPO

⭐ Invitation to Family Weekend 2025 ⭐ 📅 When? Saturday, May 24 and Sunday, May 25 📌 Where? De ProefTuin 💫 Join us for Saturday, Sunday or both days! Register now at: 👉bit.ly/3YT4nBe Let’s make this weekend special together!

Today, we celebrate the birthday of Lex van der Heijden, founder and president of CMTC-OVM! His dedication to improving the lives of people with rare diseases is truly inspiring. Wishing him a fantastic day! #CMTCOVM #Birthday #Hero

💫 Join us on Saturday, July 5, for the CMTC-OVM Family Day at Efteling! Meet us at 10:00 AM at the Kiss & Ride/bus parking area, head to the entrance at 10:15, and enter as a group at 10:30. Don’t miss this magical day! See you Saturday!🖐

🎁 Alexandra, Naomi, and Laurens are already busy preparing all the fun for the CMTC-OVM Family Day at the Efteling! ❗Don’t forget, we’re gathering at 10:00 AM at the Kiss & Ride/bus parking lot! See you on Saturday! 🖐

A huge thank you to everyone who joined our unforgettable Family Day 2024 at Efteling! We shared such special moments! Couldn’t make it? Become a member of CMTC-OVM and join us for future events! Learn more and sign up on: bit.ly/4eERRw1

Learn about the search for the genetic cause of vascular malformations like CMTC! Read the article on our website and stay updated with the latest insights: bit.ly/44zWiEV

Inspiring story! Read Katie Allen’s latest blog about her experiences and insights. Learn more about CMTC and be moved! Check it out now: bit.ly/40QxTJ5

This is why patient organizations like CMTC-OVM exist. Beyond the medical aspects between patient and doctor, living with a (rare) condition not only impacts the patient and his own life but also the lives of the people around him. More on our website: bit.ly/3AkwhsI

May we be your organization's patient organization? Become a member and help us help you and others! Membership is € 35 per calendar year and often claimable from your health insurance. Become a member via: bit.ly/3cMN3ZY

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/47uXCee

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/47uXCee

💍 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? Join the Silver Stackable Ring Workshop instead!

Lex is at the #EADVCongress 2025 in Paris! The European Academy of Dermatology and Venereology is the place to be for cutting-edge insights in #dermatology & #venereology. Patient organizations play a vital role—amplifying voices, sharing experiences, and driving change.