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 […]
Chloe’s story (USA)
Chloe was born in June of 2012. The next day, we noticed that her right arm was purple, but we dismissed it thinking that her hospital bracelet was on too tight, or possibly even that she was just very cold. The purple marbling persisted through our entire hospital stay (5 days because I had a […]
My name is Indra (Netherlands)
My name is Indra, I am 41 years old and mother to my son Mees (6). My story begins on the 14th of June 1977, when I was born at the academic hospital in Groningen. Immediately after birth, they noticed a deviation on my right arm. On the basis of what they saw alone, they […]
Our youngest son is a child with extra bonuses (Belgium)
Our youngest son is a child with extra bonuses. Our son was born after 36 weeks of pregnancy suffering from the HELLP syndrome. I had a lot of stress during my pregnancy. Pains and discomforts were attributed to me ‘being pregnant’, so I was afraid to make a fool of myself. Until I had an emergency delivery at […]
