The European Rare Kidney Disease Reference Network


QoL & Transition


To measure and compare quality of life of children and adults PedsQL and HRQoL/KDQL with rare kidney diseases and to develop and validate improvement strategies.

To evaluate the actual situation of transition structures and financing in the ERKNet centers and to develop and implement transition guidelines.

TaskForce Members

Lars Pape  Speaker
Hannover, Germany, Hannover Medical School  » Ped. center
Gema Ariceta  Barcelona, Spain, Hospital Universitari Vall d'Hebron  » Ped. center
Larissa Kerecuk  Birmingham, United Kingdom, Birmingham Women´s and Children´s Hospital  » Ped. center
Franz Schaefer  Heidelberg, Germany, University Hospital  » Ped. center
Giovanni Capasso  Naples, Italy, UOC Nephrology and Dialysis - Università della Campania  » Adult center
Francesco Trepiccione  Naples, Italy, UOC Nephrology and Dialysis - Università della Campania  » Adult center
Natalie Biebuyck  Paris, France, Necker-Enfants Malades University Hospital  » Ped. center
Pietro Manuel Ferraro  Rome, Italy, Gemelli Hospital  » Adult center
Britta Maecker  External MHH, pediatric Oncology 
Brenda de Coninck  Patient representative  
Marieke van Meel  Patient representative  

European Reference Networks
ERKNet is one of the 24 European Reference Networks (ERNs) approved by the ERN Board of Member States. The ERNs are co-funded by the European Commission.
For more information about the ERNs and the EU health strategy, please visit