Special international friendships thanks to CMTC-OVM
Niklas and Eric are both seven years old and also both have the rare blood vessel disease DCMO (Diffuse Capillary Malformation with Overgrowth). It appears as spots on their legs and back and causes them to have growth abnormalities in their legs and internal organs. Niklas lives with his family in Austria – Eric lives […]
Presentation Prof. Dr. Laurence Boon – Diagnostic and Management Pathway for Venous Malformations
Presentation by one of our medical advisors Prof. Dr. Laurence Boon about ‘Diagnostic and Management Pathway for Venous Malformations’ (English).
Blog Katie Allen Jan. 2023
While I never felt like CMTC held me back from sports and other physical activities, there have been some challenges. With a 3cm leg length difference, I tend to trip and fall at the best of times, especially in activities I competed in as a teenager. Over the years, my balance has somewhat improved; but […]
Marco Dings
On December 30, 2022, Marco Dings passed away at the age of 59. Marco was one of our early members and built our first website, among other things. In addition, he has performed numerous other information and communication technology activities for our organization. We wish Sanne, Alex, other loved ones and friends a lot of […]
Christmas and New Year wishes 2023
The CMTC-OVM Board of Directors wishes you a Merry Christmas and a Happy 2023!
New: Katie’s blog
Katie is one of our Patient Advocates who lives in Canada. She likes to share her personal experiences, such as through her personal story, but now also through her own ‘blog’. Are you also interested in sharing your knowledge and experience with others? Then please contact us.
Blog Katie Allen Dec. 2022
When asked to start a blog on my CMTC I will admit I was nervous. I have often shared my experience in person, but a blog is new, very new, so I hope you will be patient and allow me to muddle along through this shared experience. I started laser treatments when I was 12 […]
NORD 2022 – Washington DC
On October 17 and 18, 2022, the US National Organization for Rare Disorders (NORD®) hosted the Conference on Rare Diseases and Orphan Drugs. More than 830 enthusiastic attendees from around the world gathered to address and take action on the opportunities and challenges facing the rare disease community.Items on the agenda included accelerated approval, newborn […]
EADV 2022 – Milan
Van 7 tot en met 10 september 2022 werd in Milaan weer European Academy of Dermatology and Venereology (EADV) georganiseerd. Het aantal deelnemers was 14.000 uit meer dan 120 landen over de hele wereld en 600+ sprekers in 170 verschillende sessies. Stand Onze organisatie had samen met Naevus Global een stand tijdens deze conferentie. Wij […]
Eurordis 2021 – online
The annual conference of Eurordis (European Organization for Rare Diseases) this year was only an online member meeting and not a conference. As a result, there is no report.