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.
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 10 EU Member States:
• Czech Republic
• The Netherlands
• United Kingdom
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 was suggested to BOND’s European Patient Advocacy Group (ePAG) from the OIFE and is now a member of BOND’s Steering Committee. She is also represented in many (see *) of the 10 working groups of ERN-BOND:
- WG1 Diagnostic Challenge
- WG2 Research *
- WG3 Guidelines & best practise *
- WG4 Clinical Trials *
- WG5 Natural History *
- WG6 Coordination with other ERNs
- WG7 eHealth and multidisciplinary care
- WG8 Education and Training *
- WG9 Visibility towards patients & health care providers
- WG10 Stakeholders
All patient organizations for rare bone disorders can give input to ERN-BOND via the European Patient Advocacy group through Facebook Workspace. Please contact firstname.lastname@example.org if you want to join!
See more information about ePAGs from EURORDIS.
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.