Molly (USA)
Molly was able to share her perspective from her experience as a person with physical challenges and also what she’s learned from doing volunteer work with others. We have sent Molly special ‘kanjer’ (champion) stroopwafels as a token of our appreciation. ‘Kanjer’ in this context does not only mean that these are extra large stroopwafels, […]
Kenneth (Norway)
This is the story of Kenneth, told by his mother. Kenneth was born on February 18, 1994 in Harstad, Norway. He was born by caesarean section. He weighed 4150 grams, and was 53 cm long with a head circumference of 40,5 cm. We were sent to Tromsø University Hospital where he was in an incubator […]
Germany – Stefanie and 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 […]
Webinars
We regularly organize public webinars. Reports are also made of these webinars. Webinar overview and registration Webinar reports Do you have an idea for a webinar topic? Please contact us
Becca (USA)
When I entered the world on July 10, 2009 everyone thought things were going to get easier. I guess I proved everyone wrong! When I was born I had a very unusual coloring on my right leg that the doctors had never seen before. They first thought I had broken or dislocated my leg while […]
Katie (Canada)
My name is Katie and I was diagnosed with CMTC when I was 5 months old. I am now 28 years old (2021) and have lived with markings down the right side of my body and the left side of my face, neck, and skull all of my life. I have had a few complications […]
Webinar 26 June 2021 – Laser and vascular malformations
We organized this public webinar on June 26, 2021 with the topic ‘laser and vascular malformations’ by Dr. Albert Wolkerstorfer (Amsterdam University Medical Centers). In his webinar, Albert Wolkerstorfer discusses laser treatment of vascular malformations. Dr. Albert Wolkerstorfer is a dermatologist at the AMC (Amsterdam Medical Centre) specialising in pigmentation disorders and laser treatment of […]
Canada – Katie Allen
My name is Katie Allen and I was diagnosed with CMTC when I was around 5 months old. I have marks covering the right side of my body and the left side of my neck, face, and head. Additionally, I have experience with limb length discrepancy, and other impacts such as difficulties maintaining body temperature […]
Registration global members conference on location and online
On October 30, 2021 we will again organize our worldwide ‘real’ members’ conference in the Netherlands! This will be a ‘hybrid’ conference as we offer our members from all over the world to follow our conference ‘online’ as well. The conference will start with a welcome on October 29 and will last all day on […]
Webinar 22 May 2021 – After the diagnosis
We organized this public webinar on May 22, 2021 with the subject ‘after the diagnosis’ by Johannes Verheijden. Johannes is also the author of: After the diagnosis *Johannes Verheijden is Coordinator of Network Integrated Child Care at the Knowledge Centre for Child Palliative Care. After the diagnosis How do you deal with the consequences of […]