FEDERG is pleased to welcome NephcEurope as new member of our federation. Having NephcEurope with us is a great help in particular for representing the patients in the coming elaboration of the European Reference Network on Rare Renal Diseases. This adds the Nephrotic Syndrome, the most frequent rare renal disease, into the overall coverage of pathologies of FEDERG.
FEDERG and NephcEurope know each other for quite a while. Together we are the voices of the patients in various committees within EURenOmics and RD-Connect projects. Our joint expertise and efforts have contributed into depth to new developments in these projects.
NephcEurope is an umbrella organization dedicated to all aspects of care and cure for all forms of primary Nephrotic Syndrome (both genetic and also non-genetic) covering MCNS, FSGS, MPGN, membranous nephropathy and IGA Nephropathy. The organization is the international liaison between European national organizations.
NephcEurope has special attention to representation specifically in the European field on the higher EU level whereas the national patient organizations are covering national entities. We are well represented in all large kidney projects as EurenOmics (SAB and PAC), RD Connect (PEC), EurostAM a science project of Eurotransplant and Safepedrug on the development of pediatric medication. For more information see the website: www.nephceurope.eu