AIMS

• To encourage research, on a Europe-wide scale, on the natural history and pathophysiology of inherited diseases affecting the kidney. These disorders will include orphan nephropathies affecting all components of the nephron as well as cystic kidney disorders;
  
• To address the need for epidemiology data and registries, the necessity for earlier and more efficient diagnosis, the identification of new therapeutic targets and improved and affordable care;
   
• To facilitate the dissemination of knowledge to the health care providers, the patients and their families;
   
• To organize specific meetings, in conjunction with the annual ERA-EDTA congress and on specific occasions (meeting focusing on education and research proposals). 
  
Members  of our Core Group are currently involved in several EU-funded projects  addressing kidney diseases (EuReGene, Genecure, EUNEFRON, PodoNet, Escape), in  addition to multiple international collaborative efforts in clinical and more  fundamental research on inherited kidney disorders. We represent a body of  expertise involved in teaching at the national and international level, with a  deep motivation to coordinate efforts to diffuse scientific knowledge and raise  public awareness for inherited nephropathies in the EU, in collaboration with  the associations of patients and the public authorities, within the context of  the policies developed by the ERA-EDTA.
  
The  establishment of the Working Group would be an excellent opportunity to gather  the active groups working in this field, which are competing at the  international level, as well as many junior investigators and clinicians  interested in this area. It would also foster the exchange between adult and  pediatric nephrologists, with links with geneticists and more fundamental  researchers. We estimate that more than 50 groups, totalizing 200+ participants  from all across Europe, could be involved in the initial phase. We feel that we  should include colleagues interested in all types of orphan nephropathies,  including ciliopathies and cystic kidney disorders (including autosomal  dominant polycystic kidney disease which is not usually considered as a rare  disease).