The HemoNED Foundation will also make the registry data available for international reports by the following organizations.
EUHASS stands for European Haemophilia Safety Surveillance. EUHASS aims to monitor the safety of treatments for patients with hemophilia and associated bleeding disorders in Europe. As these disorders are rare and side effects of medications are also rare events, it is important to compile information about these side effects on a larger scale. For this purpose, EUHASS collects reports of side effects related to coagulation factor concentrates used by hemophilia patients throughout Europe. HemoNED periodically supplies EUHASS with the side effects recorded in the Netherlands. EUHASS publishes an annual overview report. EUHASS also functions as a watch dog: whenever a serious or unexpected side effect is reported in Europe, this will be communicated immediately to the European centres involved.
WFH stands for World Federation of Hemophilia. The WFH is a worldwide network of patient organizations for persons with rare inherited bleeding disorders in 134 countries, and it is officially recognized by the World Health Organization. The WFH aims to secure and improve the care for patients with bleeding disorders worldwide. The WFH publishes an annual overview report (WFH Annual Global Survey), for which HemoNED also provides information.
EHC stands for European Haemophilia Consortium. The EHC represents 45 patient organizations for people with rare inherited bleeding disorders from 27 European countries, which amounts to around 90,000 patients. EHC supports the patient organizations and provides mutual alignment. The EHC incidentally carries out surveys for which HemoNED will provide relevant information.