The reason behind the creation of an ERA-EDTA Working Group on Inherited Kidney Disorders:
As physicians, we are deeply concerned by the health care priority represented by inherited kidney diseases in Europe. These diseases represent a heavy physical and psychological burden for the affected patients, often children, and their families. The care of patients with inherited nephropathies suffers from major problems. The rarity of these conditions, and their phenotype variability, implies limited knowledge of the underlying mechanism(s) and natural course, lack of standardisation of diagnostic procedures, fragmentation of the clinical and biological data collections, small cohorts that restrict the power of clinical studies, without mentioning a lack of priority for the pharmaceutical industry and even public funding.
As researchers, we are aware of the necessity to generate and disseminate new scientific knowledge about the causes, mechanisms and consequences of inherited nephropathies. These efforts must involve exchange and networking at the EU level, to develop a global approach based on collaborations between complementary teams using various methodologies. An international collaboration is also crucial to avoid fragmentation of knowledge or duplication of efforts. Increasing knowledge on rare diseases will also yield new insights relevant for more frequent disorders (progression of renal disease, blood pressure control, prevention of renal stones, effect of gender and ageing, multi-systemic involvement of renal diseases, etc…).
Nine Knoers (Netherlands) – Chair
Aude Servais (France) – Vice Chair
Giovambattista Capasso (Italy)
Ewout Hoorn (Netherlands)
Emilie Cornec Le Gall (France)
Roman Ulrich Müller (Germany)
Tom Nijenhuis (Netherlands)
John Sayer (United Kingdom)
Albertien van Eerde (Netherlands)
Stephen Walsh (United Kingdom)
HOW TO JOIN THE WORKING GROUP
Being a ordinary member of the WGIKD means being part of a network which facilitates exchanges of ideas on basic science research and new treatment protocols.
Becoming an ordinary member of the WGIKD is FREE OF CHARGE (ERA-EDTA Membership is not mandatory) and is also open to non-nephrologists.
By joining the WGIKD you will receive constant updates on the Working Group initiatives be included in the Directory of WGIKD’s ordinary members and start networking with colleagues from all over the world.
The ordinary membership application is subject to validation. Please allow some time for a quick administrative check before applying multiple times.
Since 2017 WGIKD has embarked in a close collaboration with ERKNet, the EU-funded European Reference Network for Rare Kidney Diseases. WGIKD is partner, together with ERKnet, of the European Registry for Rare Kidney Diseaseswhich was granted with a EU Health Programme Research grant (360,000 EUR). WGIKD and ERKNet, the European Reference Network for Rare Kidney Diseases, are offering a Webinar series on rare kidney diseases. These are interactive live educational events, which are streamed approximately on a regular basis on Tuesdays at 4 pm CET. The Webinars are free of charge and only require prior registration. Read more
ERKnet Core Patient Registry (ongoing): The WGiKD started a collaboration with the European Reference Network for Rare Kidney Diseases (ERKNet) as per the creation of a Core Patient Registry aimed at establishing a Network-wide database of epidemiological information, to monitor performance quality and treatment outcomes, and to facilitate the identification of patient cohorts for clinical trials. The ERK-REG project, which is co-coordinated by WGiKD board members Franz Schaefer and Aude Servais, was recently awarded a 3-year grant by the EU (DG Sante Health Programme).
Ethical aspects of using genetic results for clinical decision making Albertien van Eerde, Utrecht, Netherlands Presymptomatic testing in ADPKD
Flavia Galletti, Zurich, Switzerland Genomic testing as part of mainstream nephrology;lessons for practicing nephrologists
Daniel Gale, London, United Kingdom
European Rare Kidney Diseases Network (ERKNet) Nephropathology Workshop – October 18-19 2018, Paris, France
How to become your local expert in Nephrogenetics – October 8-9 2018, Belgrade, Serbia