for Executive Committee, Scientific Committees, and Working Groups

IRDiRC new documents 

  • Report of the third IRDiRC Interdisciplinary Scientific Committee meeting that took place in Dublin, Ireland, on April 15, 2013          

     Read the report here


New documents from external sources

  • Two reports on Biobanks, "Biobanks for Europe: a challenge for governance" and "Trust in biobank research: meaning and moral significance" 

     Read the reports here


Website update

  • IRDiRC is a part of Global Alliance which will develop standards and policies to enable responsible sharing of genomic and clinical data 

     Read IRDiRC article and The Global Alliance White Paper here

  • Interview of Manuel Posada from SpainRDR which aims to build the National Rare Diseases Registry in Spain 

     Read the interview here


Other news

  • Planning of the past and upcoming first teleconferences of the Interdisciplinary Scientific Committee Working Groups and of the Diagnostic Scientific Committee Working Groups

Sophie Höhn, Communication manager, IRDiRC Scientific Secretariat IRDiRC, Plateforme Maladies Rares / Rare Disease Platform, 96 rue Didot, 75014 PARIS, FRANCE, Tel: +33 1 56 53 81 37, Fax: +33 1 56 53 81 38