I am a mother of 3 children of respectively 15, 11 and 9 years old.
My eldest, my son Niels, is suffering from a rare disease called Nephrotic Syndrome, which he got at the age of 2. He has a frequent relapsing complicated form of Nephrotic Syndrome. I have studied HND Economics & Linguistics. At this moment, I work as International Coordinator Registries for Organtransplantation at Eurotransplant in Leiden, the Netherlands. From January 2000 until 2010 I have been a volonteer in the Dutch Board for Nephrotic Syndrome of Nierpatiënten Vereniging Nederland. I am the official representative in the Dutch WINS, Working-group of the Academical Hospitals for Idiopathic Nephrotic Syndrome. In addition to this, I have worked together with the AMC/Emma Childrens Hospital In Amsterdam by giving input from the patient’s point of view for a report called Restructurization of Dutch health care for Children with Nephrotic Syndrome and more recently in the development in the parent-part of the European Registry for Nephrotic Syndrome.
Since January 2006 I have been involved in creating a multinational consortium for Nephrotic Syndrome which in January 2010 lead to NephcEurope Foundation. This is an international patient-consortium consisting of patient-organizations from 7 European countries that work together for Nephrotic Syndrome. NephcEurope Foundation works closely with ESPN-WINS, the international working group of Paediatric Nephrologists in the field of Nephrotic Syndrome. Since September 2008 I have been a voluntary member of the Platform MCRN (Medicines for Children Research Network), and of the VSOP workinggroups for Biobanks and Patient Involvement in Clinical Research with teams of other Rare Diseases Patient Groups.
