The goal of the ERNs is to improve patient care when it comes to rare diseases. Thanks to our involvement in the ERN, the University Medical Center Hamburg-Eppendorf has been making use of the ORPHA codes in addition to the mandatory ICD coding to optimise patient documentation, and consecutive treatment. An IT tool for the electronic patient chart has been developed specifically to assign an ORPHA code to patients with rare diseases which can be accessed within the entire hospital. Unlike the ICD-coding that is usually case-specific (and also specific to the actual reason for admission), this code is patient specific, gives a more detailed classification of the rare disease and can be evaluated by the central controlling unit. In addition, it provides future possibilities for research questions, controlling and strategic decisions within the health care provider.

The good news is that from this year on, the University Medical Center Hamburg-Eppendorf is receiving substantial funding from health insurance companies for providing highly specialised care for patients with rare diseases in its overarching Martin-Zeitz-Centre for rare diseases. The funds will be internally distributed partly based on the number of new patients coded with an ORPHA code. This will generate additional funding exactly where the workload is, and hopefully it will motivate all sub-centres caring for rare disease patients to actually use these ORPHA codes: a real win-win situation.