Patrons
We would like to thank our 2025 Honorary Patrons for their support of the rare disease cause.
Vytenis Andriukaitis
Member of the European Parliament (Lithuania)
Member of the European Parliament (Lithuania)
Adam Jarubas
Member of the European Parliament (Poland)
Member of the European Parliament (Poland)
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)
Vlad Voiculescu
Member of the European Parliament (Romania)
Member of the European Parliament (Romania)
H.E. Peter Moors
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
COMMITTEE
We sincerely thank the members of the 2025 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
Simona Bellagambi
Member of the EURORDIS Board of Directors; International Relations Representative, UNIAMO
Member of the EURORDIS Board of Directors; International Relations Representative, UNIAMO
Robert Blum
President & Chief Executive Officer, Cytokinetics
President & Chief Executive Officer, Cytokinetics
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
Industry consultant focusing on rare diseases & orphan drugs
Industry consultant focusing on rare diseases & orphan drugs
Daria Julkowska
Coordinator, ERDERA (European Rare Diseases Research Alliance)
Coordinator, ERDERA (European Rare Diseases Research Alliance)
Rodrigue Laurent
Press Officer
Press Officer
Tim Leest
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
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
Chair of the Committee of Medicinal Products for Human Use (CHMP)
Chair of the Committee of Medicinal Products for Human Use (CHMP)
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