Today Ingunn Westerheim from OIFE represented the rare disease patient organizations at a panel debate called the Patient Bio-Forum, organized by the company EuropaBio. This edition of the forum focused on the challenges and opportunities of the 24 European Reference Networks (ERNs), which includes “our own network” the ERN BOND – European Reference Network on…
On August 31st the inclusion of Affiliated Partners to ERN BOND was finalized. 16 centres from 10 countries are now part of ERN BOND as affiliated partners (not full members). Their expertise will support all the network’s activities and will facilitate the sharing of knowledge across the EU. Affiliated Partners should be ERN’s entry points as they improve the accessibility across the EU for patients…
The Clinical Patient Management System platform aspires to accelerate diagnosis and treatment of rare diseases in the European framework European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe who aim to tackle complex or rare diseases and conditions. There are 24 ERNs involving 25 European countries and over 300 hospitals covering all…
