Prof. Dr. Tinatin Tkemaladze (Georgia) – Medical advisor
Prof. Dr. Tinatin Tkemaladze is the head of the Department of Molecular and Medical Genetics at Tbilisi State Medical University (TSMU), as well as consultant clinical geneticist at several major pediatric hospitals. Tinatin has special interest in inherited metabolic diseases presenting as childhood neurodevelopmental disorders and syndromes with dysmorphic features. Over the last several years […]
25 years CMTC-OVM Anniversary booklet
We have developed a special Anniversary booklet for our 25th anniversary. One of the authors is Prof. dr. Jan Peter Balkenende (former Prime Minister of the Netherlands (2002-2010) is the leader of the ‘Dutch Sustainable Growth Coalition’, a partnership of eight multinationals committed to sustainable growth, professor of ‘Governance, Institutions & Internationalisation’ at Erasmus University […]
Germany – Martina Peters
Ik ben Martina Peters uit Langenhagen/Duitsland. Ik ben geboren in 1971 en werk al meer dan 20 jaar als leraar op een vakschool voor elektrotechniek en werktuigbouwkunde in Hannover. Toen Nele, mijn jongste van drie dochters, in 2011 werd geboren met CMTC, wist niemand in een ziekenhuis in de buurt waar haar plekken door werden […]
Our birthday video from Austria
Our Patient Advocates Silke & Alexander with their son Niklas from Austria made a very original video to celebrate our 25th anniversary!
New treasurer & board expansion
Jacob Schipper, our previous treasurer is now really retired and his role has been taken over by Alexandra Haan. In addition, Laurens Rorive joined our board as a communication advisor. They will officially join our board at our global membership conference on October 29 and 30. Are you also interested in joining our board? Please […]
Dr. Peter de Laat retired
Dr. Peter de Laat retired on the 1st of August 2022. Peter was one of our medical advisors, a pediatrician, and one of the members of the multidisciplinary WEVAR (Working group for Vascular Abnormalities Rotterdam) team at the Erasmus Medical Centre in Rotterdam (The Netherlands). He worked together with our medical advisor Prof. Dr. Suzanne […]
Drs. Elyse Verboom, MSc (Netherlands) – Medical advisor
Drs. Eylse Verboom, Msc, has been working in the Erasmus MC Sophia Children’s Hospital since 2015. From 2016 to 2021, she studied to become a general paediatrician. In 2021, she began her sub-specialism in paediatric haematology and shared care paediatric oncology. Since 2021, she has also been a part of the multidisciplinary WEVAR team (Working […]
Webinar 26 March 2022 – Experiences from and with parents
Life as a parent of a child with a vascular malformation (but also other conditions) is not always easy. Possibly you try to do as much as you can for your child and perhaps everything as perfectly as possible. But can you do everything perfectly and should you? Do you do it all by yourself […]
Family Day 2022: Efteling
Due to Covid-19, it has not been possible to organise a ‘proper’ Family Day for a few years. The last time was in 2019. This year we could finally organise our Family Day in full, with 80 participants from Belgium, Germany, and the Netherlands. On Saturday the 2nd of July, the attendees gathered at around […]
New series leaflets/booklets
In collaboration with various organizations and doctors, we have developed a number of series with new folders/booklets in at least 5 languages. Think of new brochures about AVM, CMTC, DCMO, Klippel-Trenaunay. We would like to thank the European Commission for sponsoring the development of the Parent Support Guide. More information