What is an ERN?
European Reference Networks (ERNs) are 24 virtual networks involving healthcare providers (HCP) across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The ERNs are governed by a board with representatives from 28 EU countries and the EEA countries (Board of Member States – BOMS). You can subscribe to the ERN newsletter through this page.
The purpose of the ERNs is:
- To foster holistic, multidisciplinary and patient-centred care
- To connect the best healthcare professionals with the best researchers, in order to improve access to cross-border medical expertise
Virtual expert advice
To give an expert review on a patient’s diagnosis and treatment, ERN coordinators convene ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools.
Who is in ERN-BOND?
The European Reference Network for Rare Bone Diseases (ERN-BOND) brings together healthcare professionals (HCP) from a number of EU Member States in addition to Norway:
- Czech Republic
- The Netherlands
OI & ERN-BOND
ERN-BOND has selected osteogenesis imperfecta, as an area of focus, to understand the common challenges in diagnosing rare bone diseases and to provide recommendations for improving referrals, reducing diagnostic errors and shortening diagnostic delays. In February 2018 a White Paper on OI was presented at the EU Commission to present the existing challenges of diagnostics in OI.
Patient Advocacy Group (ePAG)
Rebecca Tvedt Skarberg from Norway and Claudia Finis (from Germany) are representing OI in ERN BOND’s European Patient Advocacy Group (ePAG).
What does OIFE do?
OIFE assists ERN-BOND with dissemination of information through OIFE Magazine and by spreading requests to our member organizations with HCP in ERN-BOND as well as our contact persons in the countries without existing OI-organizations.