FEDERG is a non-governmental non-for-profit European federation of associations, groups and other organizations as well as individuals, who support children and adults living with renal genetic diseases.
Our overall aim is to:
Improve the health and quality of life of all those affected by renal genetic diseases, through advocacy, representation, engagement and collaboration.
FEDERG has been created to work across Europe for inherited renal diseases to:
- Facilitate access to information and care, enabling and empowering national patient groups
- Represent patient groups in the development of public health policies
- Develop the research agenda for treatment and cure through international collaboration.
FEDERG and the people behind
Representatives of national patient’s organizations and nephrologists gathered in Paris May 2012 at the occasion of the 49th ERA-EDTA, at the initiative of the AIRGs in Europe.
We are many considering that together we are stronger for our capacity in dealing with the specificities of our own pathology, as well as on the health and social life aspects that are common to all renal genetic disorders (transmission, dialysis, transplant, sports education and working with a chronic disease, etc.). We strongly believed that a European federation for renal genetic diseases was critically needed.
FEDERG is composed of 13 associations and we do hope to welcome much more in the coming months.
The goal of FEDERG is “to Improve the health and quality of life of all those affected by renal genetic diseases, through advocacy, representation, engagement and collaboration at Europe level”.
It is our assumption that, the most important way to achieve that goal, is to genuinely strengthen collaboration of patient’s group on renal genetic diseases throughout Europe (and beyond).
By strengthening collaboration on the RGDs at national level: it is critical that national associations could engage themselves into a genuine collaboration by sharing information, holding meetings in common, participating to common fund raising campaign.
By favoring the development of European pathology chapters, gathering all national groups centered on a single pathology. This should be done for pathologies for which several associations are member of FEDERG. This strengthening process for some pathology should not be made at the expenses of other diseases left aside. In fact the presence of several AIRG national organizations from Europe is the guaranty that all renal genetic diseases are on board and that all pathologies should ultimately consider developing a European chapter.
By creating transversal subgroups, on aspect of RGD that are transversal to many diseases as per needed.
By realizing full integration at Europe level: clustering the previous elements into a consistent approach and offering a real European platform of patients organization affected by renal genetic diseases.
Download Information-Flyer: FEDERG_Flyer (PDF)