08. Parents Support Guide
A series of practical booklets for parents during the different phases of their child’s life Parents Support Guide in multiple languages
Webinar 12 February 2022 – Overgrowth and vascular malformations
Prof Chantal van der Horst was a plastic surgeon at the AMC Amsterdam until her retirement in mid-2019. She focused mainly on congenital vascular abnormalities. In this webinar, Van der Horst discusses overgrowth and in particular segmental overgrowth. This is excessive overgrowth that occurs in certain parts of the body, for example one big finger, […]
03. DCMO folder
A practical folder about DCMO. The DCMO folder in multiple languages
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 […]
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 […]