Recently, the jury has come to a decision: Prof. Dr Franz Schaefer from Heidelberg University Hospital has won the prestigious Black Pearl Award of the European Rare Disease Patient Organisation, EURORDIS, in the field of science and research. With this award, the organisation honours Prof. Schaefer's exceptional commitment to rare disease research as well as his innovative work in the field of rare kidney diseases. Particular mention is made of his role in setting up the European Reference Network for Rare Kidney Diseases (ERKNet), which cares for more than 70,000 patients in 70 specialised centres across Europe, as well as his contributions to the EU Rare Diseases Funding Programme (EJP-RD).
The patient organisations linked to ERKNet form the bridge to EURORDIS, a non-profit alliance comprising 984 patient organisations from over 74 countries. This alliance represents European citizens with a wide range of rare diseases, giving "a voice to over 30 million patients". EURORDIS has established a European Patient Representative Group (ePAG) for each European Reference Network. These groups advocate for patients' concerns in the development process and coordinate the exchange between the different organisations and networks. Susana Carvajal and Uwe Korst are patient representatives on the ERKNET board. With the Black Pearl Awards, EURORDIS annually presents awards to individuals and organisations with special services to rare diseases. With 1720 nominations from over 30 countries, it is an exceptional honour to announce Prof. Schaefer as one of the award winners. The official virtual award ceremony already took place on 08.02.2022. In the same week, Uwe Korst came to Heidelberg on behalf of all European organisations to congratulate Prof. Schaefer personally.