Eurordis 2020 – online
The annual conference of Eurordis (European organization for rare diseases) was originally planned for May 14th and 15th in Stockholm (Sweden). This has been changed to an online conference because of the COVID-19/Corona virus. Originally more than 1500 participants from 57 countries were to attend. Besides being able to attend various presentations, participants would have […]
Farina Mitchell (Australia)
I am Farina Mitchell and I was born in January 1959 in Sydney Australia, the first child of Guy and Dorrie. My vascular malformation is down my left side, predominantly on my hand and arm but also across my chest, back, bottom, and splattered down my leg to my toes. I think it would be […]
Family day moved to 2021
The Efteling has informed us that because of the COVID-19 / Corona virus, no groups are allowed to visit the Efteling. We had already shifted our global Family Day to August 29, 2020, but it will not take place this year at all. We immediately agreed to a new date with the Efteling on Saturday […]
Annual Report 2019 published
Our annual report 2019 is available. We are a transparent organization and have various certifications. Our finances are assessed by three external organizations and our internal Audit Committee. Annual reports
Eden (United Kingdom)
My name is Eden, I am 16 years old (2020) and based in the United Kingdom and am a patient of CMTC. My form of CMTC consists of patterns all the way along my arms and hands, the back of my legs, and other areas all over my body. The patterns will change colour depending […]
New website live!
Our new website has a lot to offer such as: Hundreds of articles in 2 languages. Personal stories. Knowledgebase. Search function. Around 3000 photos. Over 100 videos. Folders in multiple languages. Translate the entire website with one click to another language. Hundreds of downloadable files such as folders and presentations. Chat function to make direct […]
Marcia Brands (Netherlands)
This is the story of Marcia written by her parents, Marion and Walter Brands in November 2019. Marcia was born at home in Waalre (The Netherlands) on 17 October 1989. Her brother Sander was 15 months old and completely healthy. Marcia had a large head with skull circumference of 40 centimeters at birth and weighed […]
Alfie (United Kingdom)
On the 5th of September 2003 our son, Alfie was born. He was perfect. A home delivery, caught by his fourteen-year-old sister Tess. Alfie was checked by the midwife and she left us, congratulating us on our sixth child. We had both been anxious over the pregnancy as I was 42 years old but everything […]
Sharon Terry (USA)
Sharon Terry is the director of the American Genetic Alliance non-profit organization. She is the mother of two children with PXE and has given a touching TedX performance. We have known Sharon since 2005 and thanks to her we were able to meet representatives from the United States Senate several times with the goal of […]
12 years ago, our son was born (Canada)
12 years ago (2006), our son was born. Very quickly. 34 minutes after arriving at the hospital. There was no time to even pull out the birth plan I so thoughtfully prepared. We thought the bruising was part of that fast birth. We were wrong and the way we found out was frustrating, to say […]