ERKNet is the European Reference Network for Rare Kidney Diseases. It is formed by expert centres throughout Europe that provide healthcare to more than 70,000 patients with rare diseases of the kidneys. ERKNet provides expertise on more than 300 individual kidney diseases.
Our activities and objectives are listed in the following figure.
in following diseases and conditions:
Hello, my name is Franz Schaefer and I'm a pediatric nephrologist at Heidelberg University. I have a longstanding interest in rare kidney diseases, particularly those congenital and hereditary disorders that manifest already in childhood. I have had the chance to create several European research consortia, such as the PodoNet project for podocyte disorders, the EURenOmics consortium for high-throughput research in rare kidney diseases, and the ESCAPE Clinical Research Network that runs registries, observational studies and clinical trials in children with kidney disease. In 2017, I was asked to build up a European Reference Network for Rare Kidney DIseases, which I named ERKNet. For me, it is a pleasure and truly inspiring to see the coordination team and network members throughout Europe collaborating with contagious enthusiasm to take the care of rare kidney disease patients to a new level.
Hello, I have joined the ERKNet team in 2019 as patient engagement manager, liaising the ERKNet experts with our Patient Advocacy Groups (ePAGs). Moreover, I am the coordinating manager for the ERN mobility grant programme provided by the European Joint Programme on Rare Diseases (EJP RD).
My background is business and marketing; I hold a Master´s degree and have longstanding experience in international advertising agencies and city marketing of Heidelberg. Until 2019 I was responsible as marketing & fundraising manager for the Hopp Children´s Cancer Center at Heidelberg University Hospital.
If you are active in a European rare kidney disease patient organisation and would like to work with ERKNet and our ePAGS, please contact us.