In March 2017 the European Commission initiated 24 European Reference Networks (ERN) in order to address rare or low-prevalence complex diseases which affect the daily lives of around 30 million EU citizens. By virtual networking, healthcare providers across Europe now have the opportunity to discuss a patient’s diagnosis and treatment with specialists within the network’s focus areas.

In order to get a presentation of the ERN setup see this short video or read more about each of the ERNs here.

Over 300 hospitals in 26 EU countries have so far joined the ERNs and Odense University hospital (OUH) currently participates in three of the ERNs:

VASCERN – European Reference Network on Rare Multisystemic Vascular Diseases
The network comprises of five rare diseases working groups: Hereditary Haemorrhagic Telangiectasia (HHT-WG), Heritable Thoracic Aortic Diseases (HTAD-WG), Medium Sized Arteries (vascular Ehlers Danlos Syndrome) (MSA-WG), Paediatric and Primary Lymphedema (PPL-WG) and Vascular Anomalies (VASCA-WG).

ERNICA – European Reference Network on inherited and congenital anomalies
The network is organized around two main work streams in line with ORPHANET classifications and ICD10. One work stream deals with malformations of the digestive system and the other deals with malformations of the diaphragm and abdominal wall. In the latter work stream, there are working groups covering malformations of the oesophagus and a group working on gastroenterological and intestinal diseases. This group also includes a sub-group specializing in intestinal failure.
 
ERN SKIN – European Reference Network on skin disorders
This network brings together leading experts in the field of rare child and adult skin diseases to exchange knowledge, update and develop best practice guidelines, and improve professional training and patient education.

Need more information? Or interested in learning more about the networks that OUH are part of please contact the relevant partners listed below.

VASCERN

Professor and Consultant Mrs. Anette Drøhse Kjeldsen, The Otorhinology department
Mail: anette.kjeldsen@rsyd.dk 
Phone: +45 65 41 43 14

Medical assistant Mrs. Pernille Tørring, The Clinical Genetics department
Mail: Pernille.Toerring@rsyd.dk
Phone: +45 65 41 34 58

ERNICA

Professor and consultant Mr. Niels Qvist, The Surgery department
Mail: niels.qvist@rsyd.dk
Phone: +45 29 69 46 25

Professor and consultant Mr. Steffen Husby, The Paediatrics department
Mail: steffen.husby@rsyd.dk
Phone: +45 65 41 20 90

ERN SKIN

Professor and consultant Mrs. Anette Bygum, The Dermatology and Allergy department
Mail: Anette.bygum@rsyd.dk
Phone: +45 65 41 18 03