Eurordis 2024 – Brussels
From May 15-16, 2024, Eurordis (the European Organization for Rare Diseases) organized a member conference in Brussels (Belgium). Around 400 participants attended in person and around 400 participants attended online. 15 May The meeting began with a video message from the Belgian Minister Vandenbroucke, in which he mentioned that around 30 million people with rare […]
Family Weekend 2024
On Saturday, May 25th and 26th, 2024, we organized our first international Family Weekend at StayOk in Apeldoorn, the Netherlands. A total of approximately 60 people attended from Belgium, Germany, the Netherlands, Austria, and Slovakia. In a beautiful forested area, we started on Saturday afternoon around 1 PM with a welcome reception. The children immediately […]
Please, don’t leave me behind!
Blog Katie Allen May 2024
I recently had an amazing appointment with a new specialist and while it can seem like a little thing, I have learned that the information my GP provides a new specialist, for a treatment, or while getting images done can make or break the visits and results. One example of this going very poorly was […]
New: VASCA magazine 2024!
A number of European patient organizations, working together in the European Reference Networks (such as our organisation), have published a second edition of the ‘VASCA’ magazine. Download and view online
Family Day 2024 Information and registration
Do you want to meet other families (again) and have fun together all day and evening? In addition to our Family Weekend in May 2024, we are again organizing our international Family Day in Efteling on July 6! An impression of a previous Family Day in Efteling can be seen below. Hopefully we will see […]
Blog Katie Allen April 2024
[This time I wanted to address an interesting aspect of living with a visual difference that I feel doesn’t get discussed often enough. The reality for many people who have CMTC or other vascular birthmarks on visible locations, especially the face, is the assumption many people make that a physical difference means a mental impact. […]
Meet our Katie from Canada!
Meet our Katie from Canada! Read her blog too
Blog Katie Allen March 2024
Happy Belated Rare Disease Day! The last couple of months have been exciting, with launches and decision-making occurring in Canada, and I am so excited to share the changes coming. Canada hosted a Rare Disease Day Conference on this so very rare day February 29th. We also launched the first Canadian Rare Disease Network. This […]
Program and registration Family Weekend 2024 available!
In 2024 we will organize a third event to meet each other! In addition to the well-known Family Day in the Efteling (this year on Saturday 6 July) and our members conference on 26 and 27 October, we are now also organizing a Family Weekend on Saturday 25 and Sunday 26 May 2024! Program and […]