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 […]
