News: Winners of the EURORDIS Black Pearl Awards 2018

blackpearlawards2018.pdf

PRESS RELEASE Announcement: Winners of the EURORDIS Black Pearl Awards 2018 Stars of the rare disease community recognised for their efforts through the EURORDIS Black Pearl Awards.   15 January 2018, Paris – 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 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 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. Nominations are submitted by the general public, shortlisted by a nominations committee and then selected by the EURORDIS Board of Directors. There were over 350 nominations, representing 37 different countries worldwide.  The EURORDIS Black Pearl Awards Ceremony takes 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 blackpearl.eurordis.org/live.   The EURORDIS Photo Award The EURORDIS Photo Award, the remaining EURORDIS Black Pearl Award, is an opportunity to visually express the reality of living with a rare disease on a daily basis and to share your rare disease story. Anyone around the world can submit a photo before 31 January 2018. World-renowned National Geographic photojournalist Marcus Bleasdale will select a shortlist of 5 photos that will be opened to a public vote. Online voting will open on 13 February and the winner will be announced live at the EURORDIS Black Pearl Awards Ceremony on 20 February.   #EURORDISAwards2018 Read full press release

Press contact   Eva Bearryman Communications Manager eva.bearryman@eurordis.org