Blog Katie Allen Feb. 2023
Happy Rare Disease Day! Like many patients with a rare disease, the reality is many of my doctors are not in my city. So I travel to larger centres for treatments or appointments with specialists. When I was little that meant flying from Saskatchewan to Vancouver for a meeting with the Vascular Anomalies Team at […]
Rare disease day 2023 – video Katie Allen
Katie is one of our Patient Advocates from Canada and shares a bit of her experience. We not only support people with CMTC but also with Other Vascular Malformations such as Klippel-Trenaunay Syndrome (KTS) and Diffuse Capillary Malformation with Overgrowth (DCMO).
Dr. Yakir Levin (USA) – Medical advisor
Yakir Levin, MD, PhD is a physician scientist at the Massachusetts General Hospital., where he practices laser, cosmetic, and medical dermatology. He completed his PhD in electrical engineering as well as his MD at Stanford University. After completion of his dermatology residency at Boston University, where he served as chief resident, he completed a two-year […]
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 passed away
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 […]