Our events in 2023
During our global members’ conference in 2022, we identified the needs of our members, among other things. One of the things that came out of this is that people would like more mutual contact moments. These are important signals that we have started working on. We are organizing our first Dutch Spring Meeting in Avifauna […]
Blog Katie Allen Mar. 2023
I had the wonderful opportunity to attend the Canadian Organisation for Rare Diseases (CORD) Rare Disease Day Conference on March 28th and 29th. I attended virtually here in British Columbia while the conference was held in Ottawa, allowing patients and patient advocates from across Canada to come together and sit down with Members of Parliament […]
Rare Diseases Day Netherlands 2023
On Tuesday, February 28, 2023, the Rare Angel Awards were presented in Amsterdam to three award winners because of their special significance for people with rare disorders. The Awards have been presented annually since 2009. Rare Angel in the category ‘patient or loved one’ is Marjolein van Kessel because of her tremendous effort for patients […]
CORD 2022 – Toronto
The Canadian Organization for Rare Diseases (CORD) hosted the Rare Disease 2022 Fall Conference in Toronto on November 21-22, 2022. Katie Allen (online) and Anna Janzen (physical) participated in this conference on behalf of our organization. Below are a number of short reports from various speakers. Summary Overall, it was an informative and goal-oriented conference. […]
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 […]