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 […]
Rare diseases South-Africa & CMTC-OVM
During the Eurordis conference in Scotland in 2016, we first contacted the South African organization for rare diseases. It is high time to really start working together with the aim of helping patients with CMTC and other blood vessel diseases and their families where possible. More information
Smartphone App vascular malformations
As part of the multi annual action plan, the VASCERN eHealth Working Group has developed a free Mobile Application (App) in order to enable patients and doctors to find and easily access all VASCERN Healthcare Provider (HCP) Members and Patient Organisations in Europe. This App is no longer available. We are awaiting further information from […]
Patient pathways vascular malformations – capillary 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 […]
Short survey ‘online’ Member Conference 2020
Due to the COVID-19/Corona virus, organising a physical global conference in the Netherlands is challenging. However, we still want to interact with our members, medical specialists, etc. as much as possible. Therefore we have decided to perform a survey regarding the possibilities for an online conference. Your needs and wishes are important to us! If […]
Your privacy: Privacy Shield agreement with USA invalid
The European Court declared on July 16, 2020 that the Privacy Shield agreement with the United States is invalid. This means that this agreement can no longer be used to automatically send data from Europeans to the US. The Privacy Shield was the successor to the previously invalidated Safe Harbor treaty. The agreement governs the […]