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EURORDIS Black Pearl Awards 2019

EURORDIS Black Pearl Awards 2019

EURORDIS Black Pearl Awards 2019

The 8th edition of the EURORDIS Black Pearl Awards took place on 12 February 2019 in Brussels. Congratulations to the winners!

The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day

Despite important advances, the rare disease community continues to face enormous challenges. The work and achievements of the awardees are of paramount importance to improving lives and finding cures for people living with a rare disease. Thus, 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.

The 8th edition of the EURORDIS Black Pearl Awards took place on 12 February 2019 at Le Plaza Hotel Brussels. The recipients of the EURORDIS Black Pearl Awards 2019 are:

  • EURORDIS Photo Award 2019: Deep. Derin. CFC Syndrome- Cardiofaciocutaneous. Turkey, 2018 Photographer: K.Deniz Kalayci
  • Young Patient Advocate Award Laëtitia Ouillade (France)
  • European Rare Disease Leadership Award. Prof. Till Voigtländer (Austria)
  • Policy Maker Award. Dr Edmund Jessop, NHS England (UK)
  • Scientific Award. Prof. Philip Van Damme, University Hospital Leuven (Belgium)
  • EURORDIS Volunteer Awards. Richard West, Behçet’s Syndrome Society (UK) and Russell Wheeler, Leber’s Hereditary Optic Neuropathy (LHON) Society (UK)
  • Visual & Audio Media Award. Anne-Dauphine Julliand (France)
  • Written Media Award Bojana Mirosavljević (Serbia)
  • Lifetime Achievement Award Michael Griffith (Ireland)
  • EURORDIS Members Award. ALS Liga Belgium (Belgium)
  • Company Award for Innovation. Chiesi (Italy)
  • Company Award for Patient Engagement. The HERCULES Project (Pfizer Inc, PTC Therapeutics, Roche, Sarepta Therapeutics, Solid Biosciences, Summit Therapeutics, Wave Life Sciences and Duchenne UK)
  • Company Award for Health Technology. Air Liquide Medical Systems (France)

Congratulations to all the winners! 

For more information about the EURORDIS Black Pearl Evening, visit the official website: