• 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).
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