EURORDIS Black Pearl Awards Patrons & Committee

We are grateful for the ongoing support of all of our Patrons.

Honorary Chairpersons

2021 – David Maria Sassoli, President of the European Parliament

2019 – Pavel Telička, Vice-President of the European Parliament

2018 – Georges Dassis, President of the European Economic and Social Committee (EESC)


2016 – Jerzy Buzek, Polish politician, former Prime Minister of Poland and former President of the European Parliament

2015- Giovanni La Via, Chair of the Committee on Environment, Public Health and Food Safety, European Parliament

2014 – Martin Schulz, former President of the European Parliament

2012 & 2013 – Herman van Rompuy, former Prime Minister of Belgium and first President of the European Council.

Honorary Patrons

We sincerely thank the Honorary Patrons of the 2020 EURORDIS Black Pearl Awards for supporting the rare disease cause.

Mrs Tamara Vučić, Spouse of the President of the Republic of Serbia

Mrs Michelle Muscat, Spouse of the Former Prime Minister of Malta

Adam Vojtěch, Minister of Health, Czech Republic


Joe FitzPatrick, Minister for Public Health, Sport and Wellbeing, Scotland

David Lega, Member of the European Parliament, Sweden

H.E. Ray Azzopardi, Ambassador of Malta to the Kingdom of Belgium

H.E. Urs Bucher, Head of Mission of Switzerland to the EU

H.E. Arlette Conzemius, Ambassador of Luxembourg to the Kingdom of Belgium

Black Pearl Committee

We sincerely thank the 2020 Black Pearl Committee for their longstanding support of the EURORDIS Black Pearl Awards. 

Princess Anne de Ligne, Belgium

Reem Boustany, Member of the Brussels Bar, Belgium

Marlene Haffner, President & CEO, Haffner Associates, USA

Victoria Hedley, University of Newcastle

Claudia Hirawat, Executive Chair of VOZ Advisors, USA

Prof. Alberto Pereira, Leiden University Medical Centre & Co-ordinator, Endo-ERN

Prof. Nicoline Hoogerbrugge, Radboud University Medical Centre & Co-ordinator ERN GENTURIS

Rodrigue Laurent, Press Officer

Stéphanie Hoffmann-Gendebien, GH Partners

Bruno Sepodes, University of Lisbon, Portugal & Vice Chair, Committee of Human Medicinal Products, EMA

Violeta Stoyanova-Beninska, Chair of Committee for Orphan Medicinal Products, EMA


Find out all about the individuals, organisations and companies who dedicate their lives to making a difference for the rare disease community.