Spain – Oriol
We are Stefanie and Oriol, parents of a little girl with CMTC. We currently live in Düsseldorf (Germany), where Stefanie works as a Supply Chain Professional and Oriol as a Telecom Engineer. We found the CMTC-OVM organization when we were looking for answers after receiving the diagnosis, which we could not find in Germany. We […]
Potential impact of medical intervention on children
“The operations will take place before he is two, so he won’t really remember anything about them.” More than twelve years ago, that was still the common view held in the hospital. It was really put across to us like that, too. The operations were of course unpleasant and full of risk, but he should […]
CMTC-OVM Member conference Netherlands 2021
The year 2021 is again a special year, especially because of the worldwide COVID-19 pandemic. Normally we organize our annual worldwide members conference in a conference center in the Netherlands. This year we chose not to cancel our conference but to organize it ‘online’. It was a bigger success than we expected! Members who would […]
Georgia – Prof. Dr. Tinatin Tkemaladze
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 […]
Christmas & New Year’s Wishes 2022
The Board of Directors of our CMTC-OVM organization wishes everyone a wonderful Christmas and a healthy New Year 2022!
Looking for new treasurer (the Netherlands)
Our treasurer Jacob is retiring. Jacob applied for treasurer in the year 2014 after a call we made through a volunteer website. He has not only helped our organization enormously with the professionalization of the financial administration but also in legal and tax areas. Thanks to Jacob, we have been able to automate a lot […]
25 years CMTC-OVM
On January 22, 2022, our organization will be 25 years young! We will celebrate this during our worldwide members conference in October 2022. Do you have ideas and/or do you want to help with the organization? Please contact us
Laurens & Naomi Rorive (the Netherlands) – Social media & translations
Almost immediately after the birth of our son Otis in 2019, we were faced with a medical search. The doctors at Sophia Children’s Hospital gave us confidence in the diagnostic process of which CMTC is one part. The information on the CMTC-OVM website has helped us a lot. We find it very valuable that at […]
VASCERN Conference 2021 – Paris
From September 7 to 9, 2021, the annual VASCERN congress was organized in Paris. VASCERN is one of the European Reference Networks (ERNs) in the field of rare multi-systemic vascular diseases. We as an organization are affiliated with both the ERN VASCERN and SKIN. All healthcare providers are part of recognized reference/excellence centers in their […]
Prof. Dr. Laurence Boon (Belgium) – Medical advisor
Prof. Dr. LM Boon became a Plastic Surgeon in 1996 and obtained her PhD in 2003 at the Faculty of Medicine in UCL, Brussels. She spent two years at the Children’s Hospital, Boston, Harvard Medical School, under the supervision of Prof. John B. Mulliken, to specialize in vascular anomalies. She is the Coordinator of the […]