Programme Committee

Programme Committee Co-Chairs

  Name Affiliation(s) Country
Ségolène Aymé Ségolène Aymé
  • Chair EUCERD
  • Director of International Affairs Orphanet
  • Chair Topic Advisory Group on Rare Diseases at WHO
  • Project Leader of Support IRDiRC
  • Editor in Chief of the Online Journal of Rare Diseases
photo Lesley Greene Lesley Greene
  • Vice-President CLIMB
  • Vice-Chair COMP
  • EURORDIS Patient Representative
Wills Hughes-Wilson Wills Hughes-Wilson
  • Chair of Task Force RDs & ODs of EuropaBio-EBE
  • Member EUCERD
  • Vice President External Affairs, Chief Patient Access Officer, Swedish Orphan Biovitrum (sobi)
  • Member of DIA Advisory Council Europe

Programme Committee Members

  Name Affiliation(s) Country
John Dart John Dart Debra UK, EURORDIS Board of Directors UK
Loic_Guillevin Loic Guillevin Chairman EFIM Research Working Group Hôpital Cochin – Service de Médecine Interne France
Veronique_Heon-Klin Véronique Héon-Klin German Federal Ministry of Health, EUCERD Member Germany
Thierry Laugel Thierry Laugel Managing Partner, KLS France
yann-lecam Yann Le Cam EURORDIS, Chief Executive Officer, Vice-Chair EUCERD France
Birka_Lehmann Birka Lehmann German Federal Institute for Drugs and Medical Devices, Ad-hoc member of the DIA Advisory Council, Alternate member of PDCO Germany
Kevin_Loth Kevin Loth Vice-Chair Task Force RDs & ODs of EuropaBio-EBE, EUCERD Member, Celgene UK
Milan-Macek Milan Macek Former Chairman, ESHG, Member EUCERD  Czech Republic
Christoph_Nachtigaller Christoph Nachtigaeller President, ACHSE (German National Alliance for Chronic Rare Diseases) Germany
gabor_pogany Gabor Pogany President, Rare Diseases Hungary, Member EUCERD Hungary
Peter Saltonstall Peter Saltonstall President and CEO, NORD (National Organization for Rare Disorders) USA
Bruno_Sepodes Bruno Sepodes Chair COMP, National Competent Authority, University of Lisbon Portugal
Till_Voigtlander Till Voigtländer Clinical Institute of Neurology, Medical University of Vienna, EUCERD Member Austria
Durhane_WongRieger Durhane Wong-Rieger President, CORD (Canadian Organization for Rare Disorders) Canada