Support rare diseases patients Ukraine
Particularly within the European rare diseases world, numerous initiatives have been started to support patients in Ukraine who are suffering from the war where possible. Eurordis (European rare diseases organisation) European Reference Networks (doctors) If our organization can help patients with vascular malformations and their families, please contact us. Unfortunately, we don’t have the financial […]
Prof. Dr. Suzanne Pasmans: Rare Angel Award
On Saturday, February 26 (2 days before Rare Disease Day on February 28), the Rare Angel Awards were presented to four award winners at Soestdijk Palace because of their special significance for people with rare diseases. The Awards have been presented annually since 2009. One of our medical advisors Prof. dr. Suzanne Pasmans received this […]
Brochure ‘After the Diagnosis’ translated into Georgian
One of our Patient Advocates is Prof. Dr. Tinatin Tkemaladze in Georgia. She works at the medical university in the capital Tbilisi and supervises a number of students at this university. They translated the brochure ‘after diagnosis’ into Georgian and that has been an enormous amount of work. We would like to thank this team […]
Report Members Conference 2021 available
The full report from our October 30, 2021 Global Members Conference is available. The video material is only accessible to our members. Report
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
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 […]
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 […]
