Annual report 2021 published
We have, once again, published our annual report and our annual accounts. We would like to summarise a few points. We are totally transparent. We display our financial figures, annual reports, Articles of Association, etc on our website. Not only is this required by law, but we want to do this as an organisation, too. […]
Overview ‘isolated and classic CMTC’
Dr. Millan Patel, one of our advisors, contributed to an article about the different types of CMTC. More information
Our Eden has won another prize!
Congratulations to Eden Quine-Taylor, aged 18, from Crickhowell in Wales, who has won our Ones to Watch award (sponsored by EON Productions) at the 2022 Into Film Awards. Eden has CMTC and is also one of our ambassadors. More information about the prize More information about Eden
Information & registration worldwide Members’ Conference 2022
After our last ‘real’ global Members Conference in 2019, it has not been possible for a number of years due to COVID-19 to organize a conference where you can see each other in person. In 2022 this will be possible again and that is also our 25th anniversary year!
Family Day 2 July 2022: de Efteling
Finally we can organize our International Family Day again! On Saturday 2 July we are going to the Efteling! There is something for all ages to experience from Fairytale Forest to all kinds of roller coasters. More information and registration
Launch Global Dermatology Coalition
On May 25th 2022 a patient-led multi-stakeholder group of like-minded organizations – including dermatology patient organizations, health care professionals (dermatologists and dermatology nurses), researchers, and industry – announced the formation of the Global Dermatology Coalition. This announcement comes during the 75th World Health Assembly in Geneva, as a first step in changing perceptions about the […]
Approval alpelisib by FDA
Novartis’ medicine Vijoice® (alpelisib) has recently (6 April) been approved by the US Food and Drug Administration (FDA) for the treatment of patients aged two years and older with severe manifestations of PIK3CA-related overgrowth syndrome (PROS). Until today, the only treatment options for these patients are surgical or interventional radiology procedures. More information
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 […]
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 […]