Patrons
We would like to thank our 2023 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
Frank Vadenbroucke
Minister of Health and Social Affairs of Belgium
Minister of Health and Social Affairs of Belgium
Mina Gaga
Alternate Minister of Health of Greece
Alternate Minister of Health of Greece
Frédérique Ries
Member of the European Parliament (Belgium)
Member of the European Parliament (Belgium)
Tilly Metz
Member of the European Parliament (Luxembourg)
Member of the European Parliament (Luxembourg)
Dr Véronique Trillet-Lenoir
Member of the European Parliament (France)
Member of the European Parliament (France)
Philippe Leglise-Costa
Permanent Representative of France to the EU
Permanent Representative of France to the EU
Willem Van de Voorde
Permanent Representative of Belgium to the EU
Permanent Representative of Belgium to the EU
Edita Hrdá
Permanent Representative of the Czech Republic to the EU
Permanent Representative of the Czech Republic to the EU
Marcos Alonso Alonso
Permanent Representative of Spain to the EU
Permanent Representative of Spain to the EU
Pavel Klucký
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 2023 Black Pearl Committee for their longstanding support of the EURORDIS Black Pearl Awards.
Her Highness
Princess Anne de Ligne
Black Pearl Committee Chair
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
Anders Olauson
Black Pearl Committee Vice-Chair & Chair of the NGO Committee for Rare Diseases
Black Pearl Committee Vice-Chair & Chair of the NGO Committee for Rare Diseases
Alexis Arzimanoglou
Chair of the Network Coordinators Group, Coordinator of ERN-Epicare
Chair of the Network Coordinators Group, Coordinator of ERN-Epicare
Marlene Haffner
Principal & Founder Haffner Associates, LLC
Principal & Founder Haffner Associates, LLC
Mark Rothera
Member of Board of GenPharm, President & Chief Executive Officer Viracta Therapeutics
Member of Board of GenPharm, President & Chief Executive Officer Viracta Therapeutics
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
Claudia Hirawat
Executive Chair VOZ Advisors
Executive Chair VOZ Advisors
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
Robert Blum
President & Chief Executive Officer Cytokinetics
President & Chief Executive Officer Cytokinetics
Stéphanie Hoffmann-Gendebien
EMEA Head & General Manager for Amylyx Pharmaceuticals
EMEA Head & General Manager for Amylyx Pharmaceuticals
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
Reem Boustany
Member of the Brussels Bar
Member of the Brussels Bar
Daria Julkowska
Scientific Coordinator European Joint Programme on Rare Diseases
Scientific Coordinator European Joint Programme on Rare Diseases
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
Hélène Dollfus
Co-Chair of the Network Coordinators Group, Coordinator ERN-EYE
Co-Chair of the Network Coordinators Group, Coordinator ERN-EYE
Rodrigue Laurent
Press Officer
Press Officer
Messages from our 2023 Patrons
