Anxiety and pain management in children
If you tell people something is going to hurt, it is going to hurt and every adult will recognise this from their own experience. We also need to remember that, unfortunately, some people also have a phobia of needles. So what about children who, for example, have to have a blood test, have skin flakes […]
United Nations resolution for people with a rare condition
On the 16th of December 2021, the United Nations General Assembly adopted the first-ever Resolution on ‘Addressing the challenges of persons living with a rare disease and their families.’ This milestone is a manifestation of the genuine wish of the 300 million people living with a rare disease globally to be recognised, and a formal […]
Role of patient organisations in healthcare
The role of patient organisations in the care of the patient and his/her family is becoming increasingly important. Fortunately, this is not only recognised by all those involved, but patient organisations are also increasingly being heard and involved in (medical) care. More information
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 […]
