Translation team Zuyd University of Applied Sciences 2022
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 […]
01. AVM folder
A practical folder about AVM. The AVM folder in multiple languages
04. KTS folder
A practical folder about KTS. The KTS folder in multiple languages
Support rare diseases patients Ukraine
Particularly within the European rare diseases world, numerous initiatives have been started to support patients in Ukraine who are suffering from the war where possible. Eurordis (European rare diseases organisation) European Reference Networks (doctors) If our organization can help patients with vascular malformations and their families, please contact us. Unfortunately, we don’t have the financial […]
Prof. Dr. Suzanne Pasmans: Rare Angel Award
On Saturday, February 26 (2 days before Rare Disease Day on February 28), the Rare Angel Awards were presented to four award winners at Soestdijk Palace because of their special significance for people with rare diseases. The Awards have been presented annually since 2009. One of our medical advisors Prof. dr. Suzanne Pasmans received this […]
Rare Diseases Day Netherlands 2022
Traditionally, Rare Disease Day is organized worldwide on the last day of February. We have also been doing this for years. We have also developed material ourselves and we also make it available to our Patient Advocates so that they can make their own version for their country. Former Royal Palace Soestdijk Our organization is […]
Brochure ‘After the Diagnosis’ translated into Georgian
One of our Patient Advocates is Prof. Dr. Tinatin Tkemaladze in Georgia. She works at the medical university in the capital Tbilisi and supervises a number of students at this university. They translated the brochure ‘after diagnosis’ into Georgian and that has been an enormous amount of work. We would like to thank this team […]
Webinar 22 January 2022 – Vascular tumors in children
Prof. dr. Dr. Suzanne Pasmans discusses vascular tumors in children in this webinar. How do you recognize vascular tumors? What is the difference between a vascular tumor and a vascular anomaly? What additional abnormalities/syndromes in vascular tumors should you pay attention to? What are the treatment options? Suzanne Pasmans is a (pediatric) dermatologist/immunologist at the […]
Report Members Conference 2021 available
The full report from our October 30, 2021 Global Members Conference is available. The video material is only accessible to our members. Report
Anxiety and pain management in children
If you tell people something is going to hurt, it is going to hurt and every adult will recognise this from their own experience. We also need to remember that, unfortunately, some people also have a phobia of needles. So what about children who, for example, have to have a blood test, have skin flakes […]