Patrons
We would like to thank our 2024 Honorary Patrons for their support of the rare disease cause.
Vytenis Andriukaitis
WHO Special Envoy for Universal Health Coverage for the European Region,
Member of the Political Advisory Panel of the UHC 2030 Movement
WHO Special Envoy for Universal Health Coverage for the European Region,
Member of the Political Advisory Panel of the UHC 2030 Movement
Brando Benifei
Member of the European Parliament (Italy)
Member of the European Parliament (Italy)
Kateřina Konečná
Member of the European Parliament (Czech Republic)
Member of the European Parliament (Czech Republic)
Tilly Metz
Member of the European Parliament (Luxembourg)
Member of the European Parliament (Luxembourg)
Frédérique Ries
Member of the European Parliament (Belgium)
Member of the European Parliament (Belgium)
H.E. Edita Hrdá
Ambassador, Permanent Representative of the Czech Republic to the EU
Ambassador, Permanent Representative of the Czech Republic to the EU
H.E. Willem Van de Voorde
Ambassador, Permanent Representative of Belgium to the EU
Ambassador, Permanent Representative of Belgium to the EU
H.E. Jakub Skalník
Ambassador of the Czech Republic to the Kingdom of Belgium
Ambassador of the Czech Republic to the Kingdom of Belgium
Michelle Muscat
Founder, President and Voluntary CEO The National Alliance For Rare Diseases, Malta
Founder, President and Voluntary CEO The National Alliance For Rare Diseases, Malta
COMMITTEE
We sincerely thank the members of the 2024 Black Pearl Committee for their support of the EURORDIS Black Pearl Awards.
Her Highness
Princess Anne de Ligne
Black Pearl Committee Chair
Princess Anne de Ligne
Black Pearl Committee Chair
Paola Ricci
Black Pearl Committee Vice-Chair & Founder, PHARI Fund – Fondation Philanthropia
Black Pearl Committee Vice-Chair & Founder, PHARI Fund – Fondation Philanthropia
Tony Banks
Tony Banks Consulting
Tony Banks Consulting
Simona Bellagambi
Member of the EURORDIS Board of Directors & International Relations Representative at UNIAMO
Member of the EURORDIS Board of Directors & International Relations Representative at UNIAMO
Robert Blum
President & Chief Executive Officer Cytokinetics
President & Chief Executive Officer Cytokinetics
Reem Boustany
Member of the French Brussels Bar
Member of the French Brussels Bar
Nicole Faccio
Social Media Influencer
Social Media Influencer
Marlene Haffner
Principal & Founder Haffner Associates, LLC
Principal & Founder Haffner Associates, LLC
Claudia Hirawat
Executive Chair VOZ Advisors
Executive Chair VOZ Advisors
Stéphanie Hoffmann-Gendebien
EMEA Head & General Manager for Amylyx Pharmaceuticals
EMEA Head & General Manager for Amylyx Pharmaceuticals
Daria Julkowska
Scientific Coordinator European Joint Programme on Rare Diseases
Scientific Coordinator European Joint Programme on Rare Diseases
Rodrigue Laurent
Press Officer
Press Officer
Victoria Matey
Event Psychology Advisor & Co-founder of Matey Events
Event Psychology Advisor & Co-founder of Matey Events
Mark Rothera
Member of Board of GenPharm, President & Chief Executive Officer Viracta Therapeutics
Member of Board of GenPharm, President & Chief Executive Officer Viracta Therapeutics
Bruno Sepodes
Vice-Chair of the Committee of Medicinal Products for Human Use at the European Medicines Agency
Vice-Chair of the Committee of Medicinal Products for Human Use at the European Medicines Agency
Violeta Stoyanova-Beninska
Chair of the Committee for Orphan Medicinal Products at the European Medicines Agency
Chair of the Committee for Orphan Medicinal Products at the European Medicines Agency
Geske Wehr
General Secretary of the EURORDIS Board of Directors & Chair of the Board of Directors at ACHSE
General Secretary of the EURORDIS Board of Directors & Chair of the Board of Directors at ACHSE