Skip to content

Welcome to our new website - please note, we are still in the process of translating content!

Generic filters
Exact matches only
Search in title
Search in content
Search in excerpt

Black Pearl Awards – Patrons & Committee

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
Brando Benifei
Member of the European Parliament (Italy)
Kateřina Konečná
Member of the European Parliament (Czech Republic)
Tilly Metz
Member of the European Parliament (Luxembourg)
Frédérique Ries
Member of the European Parliament (Belgium)
H.E. Edita Hrdá
Ambassador, Permanent Representative of the Czech Republic to the EU
H.E. Willem Van de Voorde
Ambassador, Permanent Representative of Belgium to the EU
H.E. Jakub Skalník
Ambassador of the Czech Republic to the Kingdom of Belgium
Michelle Muscat
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
Paola Ricci
Black Pearl Committee Vice-Chair & Founder, PHARI Fund – Fondation Philanthropia
Tony Banks
Tony Banks Consulting
Simona Bellagambi
Member of the EURORDIS Board of Directors & International Relations Representative at UNIAMO
Robert Blum
President & Chief Executive Officer Cytokinetics
Reem Boustany
Member of the French Brussels Bar
Nicole Faccio
Social Media Influencer
Marlene Haffner
Principal & Founder Haffner Associates, LLC
Claudia Hirawat
Executive Chair VOZ Advisors
Stéphanie Hoffmann-Gendebien
EMEA Head & General Manager for Amylyx Pharmaceuticals
Daria Julkowska
Scientific Coordinator European Joint Programme on Rare Diseases
Rodrigue Laurent
Press Officer
Victoria Matey
Event Psychology Advisor & Co-founder of Matey Events
Mark Rothera
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
Violeta Stoyanova-Beninska
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

Learn more about the Black Pearl Awards