Karin V. - Netherlands - 2021
In 2009 I met professor Suzanne Pasmans, on the first National Netherton Meeting in the Netherlands. She had organised that meeting, to improve her care for young child with the same condition. This kid was in a very bad condition at that time, and parents had already lost two children to Netherton syndrome. After this first meeting, Suzanne had a new group of 16 Dutch patients, all depending on her knowledge to improve their health and quality of life. This was overwhelming!
In the past years, Netherton syndrome has become a priority on her agenda, and I had the privilege to work with her on this topic! Because there is still no cure, actually also no good care for Netherton syndrome, we decided to organise the first international Netherton congress (THINC: THE INTERNATIONAL NETHERTON CONGRESS). Our first meeting in 2020 was very successful and we are looking forward to the second meeting on November 18 and 19, 2021. The first meeting was attended by 100 people, 75 of them were patients or relatives to patients, 25 were professionals. People came from all around the world, and your medical advisor Amy Paller gave a beautiful presentation about her work. It was so impressive and emotional to share this event with people who had never met a fellow patient before. It was a unique event also because we think that people with Netherton syndrome are just as experienced as their dedicated professionals. Only together can we improve quality of care and quality of life.
At the second congress we want to work on outcome measures, in a project that we call CARE4NETHERTON. At this moment we are preparing this by collecting all kinds of information about Netherton syndrome. A lot of input we collected at last year's congress. We are raising funds to make this a worldwide project. Suzanne Pasmans even decided to run the New York Marathon, unfortunately the American Borders opened for tourism on November 8, one day after the Marathon. We are very disappointed, but we will look for new options to raise funds. Last year we gathered € 13.000 as patients and doctors, by running, cycling, walking. It was a great experience.
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