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 […]
Amendment bylaws
Every year we organize our worldwide Member Conference in the Netherlands. According to our bylaws, the Board of Directors needs to report about for instance our financials and get approval for the way we managed our organisation. Before the COVID-19 / Corona virus crisis, the usual form was a physical Member Conference. Unfortunately, this does […]
Member Conference 2020
In principle, we have planned our worldwide Member Conference on Saturday October 24, 2020 in the Netherlands. Due to the COVID-19 / Corona virus it is possible that our annual conference may not take place in the usual form where we really see each other. We have previously received requests from our foreign members to […]
United Kingdom – Nikki & Matthew Bailey
I am Nikki and my husband is Matthew. We are both Scottish but live in Wales. I am a Social Worker and Matthew is a senior Project Manager. Matthew and I are the parents of six children with ages ranging from 25yrs – 4 yrs. Alfie is our youngest child. We had an uncomplicated pregnancy […]
Russia – Anastasia
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Poland – Dorota Blacharska
My name is Dorota Blacharska and I live in Szczecin in Poland. I’m a nurse and work in the Department of neurosurgery. I am married to Mariusz (54) and we have three children: Krzysztof (24), Dominika (20) and Ania (7). They all have HAEi and Ania has CMTC. My goal is to increase the knowledge […]
