European Reference Networks ERN
European Reference Networks (ERN) are an EU initiative that brings together teams of experts from across Europe to improve care and research in rare and complex diseases. The aim is to ensure that patients have access to more equitable care and expertise, regardless of where they live in the EU.
European Reference Networks (ERN) are an EU initiative that brings together teams of experts from across Europe to improve care and research in rare and complex diseases. The aim is to ensure that patients have access to more equitable care and expertise, regardless of where they live in the EU.
Why is ERN important?
ERN brings together expertise from across Europe and helps doctors diagnose and treat rare and complex diseases.
- Rare diseases affect fewer than 5 in 10 000 people.
- Around 30 million people in Europe live with a rare diagnosis.
- Expertise is often concentrated in a few centres – ERN makes it accessible to more patients and healthcare professionals.
There are currently 24 networks connecting more than 1,600 clinical centres across the Union.
ERN for you as a care provider
Uppsala University Hospital is a member of six European Reference Networks. Membership and involvement in an ERN develops the corresponding highly specialised services at Uppsala University Hospital and benefits both patients and referrers. The ERN brings together experts to produce guidelines, develop quality registers and create structures for research.
Clinical Patient Management System (CPMS)
Membership also provides access to a Clinical Patient Management System (CPMS) – a platform for secure sharing of patient data and consultation with colleagues within the network regarding the management of particularly complex cases.
For more information see CPMS 2.0 (ern-net.eu).
Support function for ERN members at Uppsala University Hospital
The NHV administration supports the organisation in its day-to-day work with NHV and ERN. (link to the page about the NHV administration) The NHV administration collaborates with the Centre for Rare Diagnoses, Central Sweden (CSD) regarding ERN.
Contact us
Daniel Nowinski daniel.nowinski@akademiska.se, contact person for NHV and ERN
CSD Central Sweden e-mail: csdmellansverige@regionuppsala.se and telephone number 018-612 21 34.
Akademiska sjukhuset is a member of the following European Reference Networks
ERN Cranio
Craniofacial malformations and rare ear, nose and throat diagnoses.
Responsible: Daniel Nowinski
Read more about the Craniofacial Centre.
Vascern
Hereditary aortic diseases, vascular Ehlers-Danlos and vascular malformations.
Contact person: Anders Wanhainen and Anna Stenborg
ERN Skin
Rare skin diseases.
Contact person: Marie Virtanen and Katja Holmgren
Ernica
Congenital gastrointestinal diseases (gastroenterological conditions).
Contact person: Elisabet Gustafsson
Eurogen
Rare urological conditions that require advanced surgical treatment.
Contact person: Gisela Reinfeldt Engberg
Eurocan
Rare tumour diseases, such as neuroendocrine tumours.
Contact person: Staffan Welin and Peter Stålberg
The JARDIN project
The EU's JARDIN project (2023-2026) aims to integrate the European Reference Networks (ERNs) into national healthcare systems. This includes the following pilot projects:
- Clearer patient pathways.
- National reference networks.
- Better data management for rare diagnoses.
These pilot projects are a promising way to provide EU Member States with directly implementable solutions for their healthcare systems.
Read more about ERN
European Reference Networks (socialstyrelsen.se)
European Reference Networks - European Commission (health.ec.europa.eu)