There are currently 24 European Reference Networks and the aim is to improve the standards of patient care and increase clinical knowledge of rare diseases across Europe. Hospitals, doctors and patients (represented by patients’ organisations) work together to improve the expertise and standards of care and to increase public awareness of rare diseases.

The ERN RARE-LIVER network has been under the coordination of Prof. Dr. Ansgar W. Lohse, Head of I. Department of Medicine at the UKE, and Prof. Dr. Christoph Schramm, Head of the Martin Zeitz Centre for rare diseases at the UKE since 1 March 2019. Involvement will help us to link competences in the area of rare liver diseases and in particular, in immunological liver diseases. There is not only potential for clinical care, but also for the improvement of research.

The CPMS (Clinical Patient Management System) allows doctors from all participating centres to upload anonymised patient data from difficult cases and to consult with experts from all over Europe on diagnosis and treatment. In this way, the patient does not need to travel to access the best possible standard of care.

A disease is considered rare if they affect less than 5 in 10,000 people. Overall, between 6,000 and 8,000 rare diseases affect the daily lives of around 30 million people in Europe. Because there is only a small number of these patients in each EU country, forming a sufficiently large patient spectrum at national level for research is a great challenge. With the high degree of specialisation required for the diagnosis and treatment of these diseases, there are only a few specialists across Europe for the diseases in question. The activities of ERNs are supposed to fill the resultant gaps in specialized care.

Please direct inquiries to the UKE ERN Rare-liver: [email protected]

For more information, see: http://rare-liver.eu/