Rare diseases Australia & CMTC-OVM
Our first contact with patients in Australia dates back to around 2005. During the Eurordis conference in 2016 in Scotland we met Prof. Dr. Gareth Baynam for the first time and met him again in Israel in 2019 during the CORD conference. High time to really start working together with the aim to help patients […]
Rare diseases Austria & CMTC-OVM
We have known the Austrian organization for rare diseases for many years. During a private holiday in 2019, we were in Vienna, among other places, when we actually visited this organization and gave a pack of ‘stroopwafels’. It is high time to really start working together with the aim to help patients with CMTC and […]
Rare Diseases China & CMTC-OVM
We regularly come across rare diseases organizations at various international conferences that are committed to an entire country, such as NORD for the USA. This time China is discussed. High time to really start working together with the aim to help patients with CMTC and other blood vessel diseases and their families where possible. More […]
Thinking the other way around in patient organizations
In the Netherlands, patient organizations are taken very seriously. The Ministry of Health, Welfare and Sport (HWS) enables patient organizations to do their work by providing subsidies, for example. In addition, patient organizations are involved in all kinds of policies and activities in many areas of healthcare. We as an organization are a member of […]
Global Member Conference 2020: online
Many (international) conferences have been cancelled in 2020 due to the COVID-19 / Corona virus. Unfortunately, this also applies to our worldwide member’s conference in the Netherlands on October 24, 2020. Instead, we organize an ‘online’ members conference via ZOOM. In doing so, we take into account the time zones where our members live (such […]
Rare disorders Kenya & CMTC-OVM
One of our members lives in Kenya and is not only active in the Kenyan organization for rare diseases, but she is also one of our Patient Advocates. We finally met in person during the Canadian Organization for Rare Diseases International Conference in Toronto in 2019. It is high time to really start working together […]
Medication and vascular malformations
Does Sirolimus work in vascular malformations? Read what Prof. Dr. Laurence Boon and Prof. Dr. Miikka Vikkula (one of our advisors) recently published on this subject. We have made a summary of their scientific article in as much layman’s language as possible. Article Private Facebook group Sirolimus
Secure online community survey (one question)
Due to developments in the field of privacy (European Court statement and Facebook uses personal data again without the consent of those involved), we want to set up our own secure online Community. We would like to know what YOU want. For this we have made a survey consisting of one question. Do you want […]
Patient pathways vascular malformations – Venous malformation
Patient Pathways aim to improve the care and management of patients with a rare disease. They are a very important tool used in defining the best patient care. Disease (or group of disease)-specific Patient Pathways are being developed by each of VASCERN’s Rare Disease Working Groups (RDWGs) in order to indicate the optimal mode of […]
