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 […]
WCRSD 2024 – Paris
For the second time, the World Congress on Rare Skin Diseases was organized in Paris from June 12 to 14. The number of attendees was around 400. This congress brings together doctors and patient representatives from around the world for rare skin diseases. There was a large representation of patient advocates from various countries in […]
Blog Katie Allen September 2024
The last topic I wanted to cover in this little series about the transition from pediatrics to adult care was the hardest part for me, the loss of the team approach to my condition. In the BC Children’s Hospital, where I had my pediatric care, I had an incredible vascular malformation team, which consisted of […]
EADV 2024 – Amsterdam
This year, the global EADV (European Academy of Dermatology & Venereology) conference was held in Amsterdam from October 25 to 28, 2024. The congress consisted of 180 sessions, more than 650 speakers, and over 17,000 participants from around the world. The CMTC-OVM delegation consisted of two people: Laurens Rorive and Lex van der Heijden. We […]
Added value patient organisations for medical professionals
As one of the many Patient Organizations, we visit all kinds of conferences with the main goal of making the patient’s voice heard and contributing to improving the quality of life of the patient and his/her family. Because what is it really about? The patient! And what is a doctor doing? The patient too! It […]
ISSVA 2024 – Madrid
From May 7-10, 2024, ISSVA (International Society for the Study of Vascular Anomalies) organized a conference in Madrid, Spain. Approximately 800 participants attended in person, and around 200 participated online. On the first day, topics covered included vascular tumors, vascular malformations, pathology, interventional radiology, and surgery. The second day delved deeper into vascular tumors and […]
Naevus Outreach 2024 – St. Louis (USA)
This year, the Nevus Outreach conference took place in Saint Louis, Missouri. Representing Nevus Netwerk Nederland (NNN), Janine van den Eijnden (NNN buddy) and Marjolein van Kessel (NNN board member) attended the congress. What does Nevus Outreach do to be successful? What inspires us? What information and experiences are we bringing home? Marjolein and Janine […]
Agenda and Registration for Members’ Conference Netherlands 2024
It’s time once again for our Global Members’ Conference in the Netherlands 2024! The conference begins on the evening of Friday, October 25th, and concludes after lunch on Sunday, October 27th. This year, we have another very diverse agenda with various speakers, a panel to answer your questions, chair massages, excellent lunch and dinner buffets, […]
