The launching meeting of the FEDERG’s initiative – Federation of European patient groups affected by Renal Genetic Diseases (RGD) – was held at the initiative of AIRG-France on May 26, 2012 as a dedicated meeting within the 49th ERA-EDTA Congress held in Paris, Palais des Congrès.
The launching meeting was supported by ERA-EDTA (European Renal Association and European Dialysis and Transplantation Association), by ESPN (European Society of Pediatric Nephrologists), by EURORDIS, and by AIRG-France.
The meeting brought together 10 nephrologists, some had made the trip especially for the meeting FEDERG, and 10 representatives of associations of renal genetic diseases.
The meeting has been an opportunity for all participants of the launching, to express and share unanimously the desire to see the emergence of a European federation. The willingness to join forces is present, and is ready to concretize itself and expand to others.
The first part of the meeting chaired by Professor Yves Pirson, Chairman of the Scientific AIRG Belgium, focused on the perspective of nephrologists about the importance of considering the genetic renal diseases in a European context .The speakers were Professor Dominique Chauveau, Chairman of the Scientific Committee, AIRG-France, Prof. Oliver Gross, Nephrologist Göttingen, also representing the German group of patients on Alport syndrome, Dr Elena Levchenko of Leuven, representing pediatric nephrologists and the society ESPN, and Prof. Olivier Devuyst Zurich, Head of the Working Group of the ERA-EDTA on Inherited kidney disorders.
Each speaker was able to propose and develop strong arguments that advocate for an efficient organization at the European level of all patient groups and associations with a wide scope of diseases (renal and multi-organs) and not restricted to a single pathology.
The second part of the meeting, chaired by Daniel Renault, President AIRG France, was dedicated to identify the motivational elements of the associations represented and initialize the following preparations in the construction of the federation. Associations were represented either directly by the members present (some excused because of health problem) or by nephrologists attending the conference: – 8 countries of the EU-27 were represented: Germany – Belgium – Bulgaria – Spain-France – Ireland – Netherlands – United Kingdom; – 2 outside countries: Switzerland and Morocco as well as two international federations.
In the short time of two hours, the meeting allowed everyone to know each other and to outline areas of work and mobilization for the future. The collaboration between nephrologists and patient groups is recognized by everyone as the key to high efficiency. At the same time, it is recognized that it is hard to get patients mobilized in some contexts; therefore external support might be required. This should be one of the roles of FEDERG to support the emergence of local associations in national contexts unfavorable!
Beyond targeting a good collaboration between nephrologists and patient groups, the improvement of the “quality of life” for those who suffer from genetic kidney disease, has been emphasized by many as a priority. This should also be one of the focuses of a European federation.
Full reports of the meeting by clicking our AIRG-France website (see link below) and on the FEDERG web platform where you can directly contribute to and monitor the progresses of the federation.
One of the main recommendations of the meeting is to quickly enlarge the basis of FEDERG to more associations, covering more pathologies as well as more European countries.