The International aHUS Conference “The Dutch Approach”, organized by The Dutch Renal Patient Organization in close collobaration with the Radboudumc HUS expertise center was successfully being held on Friday 9 November in Nijmegen.The attendees were a mix of clinicians and members of aHUS patients organizations from all over the World (Canada, USA, UK, India, Roemenia, Germany, Spain, Russia, France). Speakers at this conference were the researchers of the CUREiHUS Research Group (pharmacist Rob ter Heine, nephrologist in training Caroline Duineveld, postdoc researcher TML Elena Volokhina, pediatric nephrologist Nicole van de Kar). As stated in the title “Dutch Approach” the CUREiHUS researchers explained the Dutch national guideline for the treatment of aHUS and our unique Dutch strategy towards a restrictive, safe and effective use of the drug eculizumab in patients with atypical hemolytic uremic syndrome (aHUS).
A summary (english) of this symposium was provided by the International aHUS Global Alliance patient organization as well as an interview with the CUREiHUS researchers.
A podcast concerning the reimbursement eculizumab for aHUS in the Netherlands was recorded by the Dutch Renal Patient Organization. In this podcast Zorginstituut Nederland, clinicians from Radboudumc HUS expertise center as well as Dutch Renal Patient Organization were interviewed about the reimbursement procedure of eculizumab.
Photo: Members of the International aHUS patient organizations,10 November 2018, Nijmegen
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