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 […]
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 […]
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, […]
Help Matthias, who has a port-wine stain
Hi everyone! 🤍 My name is Matthias, and I was born with a port-wine stain. This personal experience has inspired me to pursue a career in dermatology, where I hope to give back to the amazing community that has supported me. As part of my studies, I’m conducting research on the psychological and social impacts […]
Please, don’t leave me behind!
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 […]
Meet our Katie from Canada!
Meet our Katie from Canada! Read her blog too
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 […]
