Winners of the EURORDIS Black Pearl Awards 2018!

Stars of the rare disease community recognised for their efforts through the EURORDIS Black Pearl Awards.

January 15, 2018

The EURORDIS Black Pearl Awards are presented to the stars of the rare disease community - patient advocates, organisations, policy makers, scientists, companies and media - for their major achievements and their outstanding commitment to the rare disease cause.

There were over 350 nominations, representing 37 different countries worldwide. The recipients of the EURORDIS Black Pearl Awards 2018 have been announced as:

  • EURORDIS Young Patient Advocate: Sammy Basso, Associazione Italiana Progeria Sammy Basso, Italy
  • EURORDIS European Rare Disease Leadership Award: Bruno Sepodes, Chair, Committee of Orphan Medicinal Products, European Medicines Agency, Portugal
  • EURORDIS Policy Maker Award: Elena Gentile, Member of the European Parliament, Italy
  • EURORDIS Scientific Award: Professor Michele de Luca, University of Modena and Reggio Emilia, Italy & Dr Tobias Hirsch, BG University Hospital Bergmannsheil, Germany
  • EURORDIS Volunteer Awards: Chris Sotirelis, UK Thalassaemia Society, United Kingdom, Helene and Mikk Cederroth, Wilhelm Foundation, Sweden
  • EURORDIS Patient Organisation Award: European Pulmonary Hypertension Association
  • EURORDIS Company Award for Innovation: Novartis
  • EURORDIS Company Award for Patient Engagement: The PARADIGM Project (the European Federation of Pharmaceutical Industries and Associations-EFPIA, Bayer, UCB and MSD)
  • EURORDIS Visual and Audio Media Award: Special Books by Special Kids, Christopher Ulmer, USA
  • EURORDIS Written Media Award: ‘On peut changer le monde en vendant des crêpes et des ballons’, Serge Braun, AFM-Téléthon, France
  • EURORDIS Lifetime Achievement Award: Alastair Kent OBE, United Kingdom

The EURORDIS Black Pearl Awards Ceremony will take place in Brussels on 20 February to celebrate Rare Disease Day, the global awareness-raising campaign for rare diseases.

To attend the event in person find out more about ticket prices or to watch the
ceremony online, join the livestream at 20:15 CET via


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