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
[vc_section full_width=”stretch_row” css=”.vc_custom_1585128400841{background-color: #576283 !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][/vc_column][vc_column width=”2/3″][vc_empty_space][mk_fancy_title strip_tags=”true” tag_name=”h1″ color=”#ffffff” size=”60″ line_height=”90″ font_weight=”bolder” margin_bottom=”0″ font_family=”none”]Nikki & Matthew Bailey (United Kingdom)[/mk_fancy_title][mk_divider style=”thick_solid” divider_width=”custom_width” custom_width=”70″ align=”left” border_color=”#a1aabe” visibility=”hidden-sm”][mk_fancy_title strip_tags=”true” tag_name=”h5″ color=”#ffffff” size=”16″ font_weight=”400″ margin_bottom=”0″ font_family=”none”]Patient advocate[/mk_fancy_title][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space height=”64px”][/vc_column][/vc_row][/vc_section][vc_section full_width=”stretch_row” css=”.vc_custom_1585137324203{background-color: #ffffff !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_wp_custommenu title=”Patient advocates” nav_menu=”275″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2020/04/bailey-uk-rotated.jpg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1593680378155{margin-bottom: 0px !important;}”]I am Nikki and […]
Russia – Anastasia
[vc_section full_width=”stretch_row” css=”.vc_custom_1585128400841{background-color: #576283 !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][/vc_column][vc_column width=”2/3″][vc_empty_space][mk_fancy_title strip_tags=”true” tag_name=”h1″ color=”#ffffff” size=”60″ line_height=”90″ font_weight=”bolder” margin_bottom=”0″ font_family=”none”]Anastasia (Russia)[/mk_fancy_title][mk_divider style=”thick_solid” divider_width=”custom_width” custom_width=”70″ align=”left” border_color=”#a1aabe” visibility=”hidden-sm”][mk_fancy_title strip_tags=”true” tag_name=”h5″ color=”#ffffff” size=”16″ font_weight=”400″ margin_bottom=”0″ font_family=”none”]Patient advocate[/mk_fancy_title][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space height=”64px”][/vc_column][/vc_row][/vc_section][vc_section full_width=”stretch_row” css=”.vc_custom_1585137324203{background-color: #ffffff !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_wp_custommenu title=”Patient advocates” nav_menu=”275″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2020/04/anastasia1-rusland.jpg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1593679884512{margin-bottom: 0px !important;}”]Hello, my name is Anastasia! We live in […]
Poland – Dorota Blacharska
[vc_section full_width=”stretch_row” css=”.vc_custom_1585128400841{background-color: #576283 !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][/vc_column][vc_column width=”2/3″][vc_empty_space][mk_fancy_title strip_tags=”true” tag_name=”h1″ color=”#ffffff” size=”60″ line_height=”90″ font_weight=”bolder” margin_bottom=”0″ font_family=”none”]Dorota Blacharska (Poland)[/mk_fancy_title][mk_divider style=”thick_solid” divider_width=”custom_width” custom_width=”70″ align=”left” border_color=”#a1aabe” visibility=”hidden-sm”][mk_fancy_title strip_tags=”true” tag_name=”h5″ color=”#ffffff” size=”16″ font_weight=”400″ margin_bottom=”0″ font_family=”none”]Patient advocate[/mk_fancy_title][/vc_column][/vc_row][vc_row][vc_column][vc_empty_space height=”64px”][/vc_column][/vc_row][/vc_section][vc_section full_width=”stretch_row” css=”.vc_custom_1585137324203{background-color: #ffffff !important;}”][vc_row][vc_column][vc_empty_space][/vc_column][/vc_row][vc_row][vc_column width=”1/3″][vc_wp_custommenu title=”Patient advocates” nav_menu=”275″ el_class=”leftsubmenu”][/vc_column][vc_column width=”2/3″][mk_image src=”https://www.cmtc.nl/wp-content/uploads/2020/04/dorota-polen.jpeg” image_size=”full”][vc_column_text disable_pattern=”false” margin_bottom=”10″ css=”.vc_custom_1593679343002{margin-bottom: 0px !important;}”]My name is Dorota Blacharska and I […]
