Five years ago, the European Commission established reference networks for rare and complex diseases to enhance the challenging care of affected patients. Meanwhile, the European Commission has independently evaluated these reference networks.
In this 5-year evaluation, the European Commission particularly praises the University Medical Center Hamburg-Eppendorf for its leadership role in directing the European Reference Network for Hepatological Diseases (ERN RARE-LIVER). The UKE also receives top marks for its role in caring for patients with rare liver diseases.
In the European Union, a disease is considered rare if it affects no more than five out of 10,000 people. This corresponds to a disease prevalence of less than 0.05 per cent, making it likely that even the average specialist has never encountered or seen it at most once. For individuals with rare diseases, it is often very challenging to receive timely and accurate diagnoses, as well as the personalised treatment options they require.
Professor Christian Gerloff, Medical Director at the University Medical Center Hamburg-Eppendorf, is pleased with this recognition at the highest European level: “Research and the clinical care of patients with rare diseases are core areas of university medicine, and only university hospitals can provide this expertise.”
The goal of the RARE-LIVER network is to grant every affected patient access to this specialised knowledge and collectively improve the diagnosis and therapy of these rare diseases.
Professor Ansgar W. Lohse, Director of the I. Medical Clinic and Polyclinic at the UKE and Coordinator of ERN RARE-LIVER, explains: “Patients with rare liver diseases are often stigmatised, as the liver is associated with alcohol and other common lifestyle diseases. Innocently affected patients with rare, often serious liver diseases, therefore, need our special attention. We are delighted with this recognition of our work.”
The impressive success of this mission is now illuminated in the 5-year evaluation by the European Commission in its final report: “The healthcare provider (UKE) has excellently participated in ERN-related activities by collecting outcome indicators, supporting the development of ERN activities, implementing guidelines for clinical practice and decision-making tools created by the ERN, and utilising a variety of channels to disseminate ERN activities.”
As one of 24 European reference networks, ERN RARE-LIVER collaborates with 80 university centres in more than 25 countries. The aim is to pool the knowledge and experience of liver specialists across Europe and make it available to all patients, taking into account the specific needs of those affected by involving patient representatives. Additionally, the goal is to promote scientific progress in this field, an objective highlighted as exemplary by the EU evaluation team: “Both objectives were achieved, thus improving clinical care, directly benefiting the patients.”
For additional information, please visit our website at www.rare-liver.eu
If you have any questions, you can reach the ERN RARE-LIVER team: ERN.RareLiver@uke.de.