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
[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
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 […]
Austria – Silke Rotter
My name is Silke Rotter and I’m 39 years (2019) old. I received my education in Vienna and have worked since 2000 for the Viennese Government. In 2002 I married Alexander (1979). He works as a truck driver for a global pharmaceutical company. We have three children; they were born in 2003, 2005 and 2016. […]
Prof. Dr. Suzanne Pasmans (Netherlands) – Medical advisor
Suzanne Pasmans completed her medical training in Leiden and graduated cum laude. In 1996 she graduated from the University of Amsterdam on IgE -dependent histamine -releasing activity, and has a degree as an immunologist. At the Institute Curie, Inserm, Paris she studied molecular biological research. In 2000 she completed training as a Dermatologist /Venereal in […]