Prof. Dr. Peter Steijlen retired
Prof. Dr. Peter Steijlen from Maastricht University Medical Center (MUMC+, the Netherlands) will retire as of January 8, 2025. Peter has been a medical advisor to our organization for many years. We would like to thank him for his contributions and wish him a long and healthy retirement!
Patient pathways
Patient pathways aim to improve the care and management of patients with a rare disease. These pathways include the “red flags” that may lead to the suspicion of the disease, the steps to reach a definitive diagnosis, and recommendations for management and follow-up. They are a very important tool in defining the best patient care […]
Merry Christmas and a Happy 2025
The CMTC-OVM board wishes everyone a Merry Christmas and a Prosperous 2025!
Members conference NL 2024
Around 50 people participated in our conference (a limited number joined online, including from Canada and the UK). Participants came from Belgium, Germany, England, the Netherlands, Austria, Poland, and Slovakia. Quite a few members turned out to be on vacation, which meant we had fewer attendees. We plan to handle this differently in 2025. This […]
Overview genes and vascular malformations
Over time, researchers are gaining more clarity about which genes are involved in which conditions, and vice versa. One of these researchers is Prof. Dr. Miikka Vikkula (one of our advisors). He has developed and maintains a timeline that links specific genes (potentially) to certain vascular malformations. More information
Blog Katie Allen November 2024
In a continuation of our blogs on working with a rare disease, this month we are discussing some of the challenges presented by more office-typical workplaces. As always these blogs are written from my perspective and experiences, so everyone will have different challenges, both from their own body experiences and based on co-workers, as they […]
Blog Katie Allen October 2024
Working with any rare disease presents many challenges, with a visible condition, like my vascular malformation, different workplaces have different hurdles to overcome. I have been lucky enough to have experience working in both public-facing jobs and in more office-typical placements. For brevity, I will discuss challenges in public-facing jobs in this blog and address […]
Laurens: EUPATI fellow
Our Laurens is EUPATI Fellow! A EUPATI Fellow is someone who has completed an intensive training program through the European Patients’ Academy on Therapeutic Innovation (EUPATI). This program focuses on equipping patients, caregivers, and other stakeholders to take an active role in medicines development and health research. Purpose of EUPATI EUPATI is a European initiative […]
Help our Eden
My name is Eden, I’m 20 years old and from Wales, UK. I was diagnosed with CMTC as a baby. I have never known a life without my condition, however, I certainly encountered the difficulty of coming to terms with my body as a young child. However, as I got older and more accustomed to […]
Prof. Dr. Eulalia Baselga (Spain) – Medical advisor
Eulalia Baselga is currently the Head of Dermatology at Hospital Sant Joan de Déu, Children’s Hospital, and an Associate Professor at the University of Barcelona. The Department of Dermatology is a member of the ERN-VASCA and ERN-Skin European networks. Her main area of research focuses on vascular anomalies, and she is currently the principal investigator […]