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 […]
Rare disease day 2024
This year, our Patient Advocates from Canada, Austria and South Africa were active. On the final day of February, this year that was the 29th, Rare Disease Day is organised by the VSOP, the Dutch National Patient Alliance for Rare and Genetic Diseases. During the evening programme, the Rare Angel Awards were presented to three […]
Our Patient Advocate Erika (South Africa) 2nd place Eurordis Photo contest 2024
Once a year, around Rare Disease Day, the European Organization for Rare Diseases (Eurordis) organizes, among other things, a photo competition about patients. Our Patient Advocate Erika from South Africa won the second prize! We are very proud of our Erika! More about our Erika
Translation team Zuyd University of Applied Sciences 2024
Our organization operates worldwide, which means that we offer our information in multiple languages. For example, our website is available in English and Dutch and our information leaflets in at least German, English, French, Dutch and Spanish. The translation work takes quite some time and we are always looking for volunteers to help. Zuyd Vertalingen […]
Skin at school
Skin complaints are often underestimated, while research shows that the quality of life of people with chronic conditions decreases and that the impact of bullying on children with skin conditions is huge. Lack of basic knowledge about the skin is a major factor in this. The Dutch Society for Dermatology and Venereology has noticed that […]
Laser in dermatology: past, present and future
The rise of the laser in dermatology brought about a true revolution in the treatment of various skin conditions. Laser technologies have paved the way for both cosmetic and medical applications, providing dermatologists with a range of effective and safe treatment options. In this article we describe in a nutshell the history, contemporary applications and […]