EURORDIS Black Pearl Awards Patrons & Committee Members

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

Honorary Chairpersons

We thank all of our distinguished Honorary Chairpersons listed below who have supported the event since the very first edition in 2012.

We thank David Maria Sassoli, President of the European Parliament, for serving as the Honorary Chairperson for the 10th anniversary of the EURORDIS Black Pearl Awards, taking place on 24th February 2021 is 

2019 – Pavel Telička
Vice-President of the European Parliament

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

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

2014 – Martin Schulz
former President of the European Parliament

2016 – Jerzy Buzek
former Prime Minister of Poland and 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 2021 EURORDIS Black Pearl Awards for supporting the rare disease cause.


Sandra Zampa
Under-Secretary of State for Public Health

Arlette Conzemius
Ambassador of Luxembourg to the Kingdom of Belgium

Michelle Muscat
Spouse of the former Prime Minister of Malta

Philippe Leglise-Costa
Ambassador Extraordinary and Plenipotentiary — Permanent Representative of France to the EU

Rado Genorio
Ambassador Extraordinary and Plenipotentiary of the Republic of Slovenia to the Kingdom of Belgium, to the Grand Duchy of Luxembourg, the Republic of Cabo Verde, the Federal Democratic Republic of Ethiopia and to the African Union

Ray Azzopardi
Ambassador Extraordinary and Plenipotentiary Ambassador of Malta to the Kingdom of Belgium

Pavel Klucký
Ambassador of the Czech Republic to the Kingdom of Belgium


Black Pearl Committee 

We sincerely thank the 2021 Black Pearl Committee for their longstanding support of the EURORDIS Black Pearl Awards.


Princess Anne de Ligne

Reem Boustany
Member of the Brussels Bar

Vytenis Andriukaitis
WHO Special Envoy for the
European Region

Simona Bellagambi
EURORDIS Board of Directors &
Uniamo (Italian Federation of Rare Diseases)

Robert Blum
President and Chief Executive Officer, Cytokinetics

Hélène Dollfus
Strasbourg University Hospital
& ERN-EYE Coordinator

Marlene Haffner
Chief Executive Officer Haffner Associates, LLC.

Claudia Hirawat 
Executive Chair, VOZ Advisors

Stéphanie Hoffmann-Gendebien

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

Daria Julkowska
Coordinator, European Joint
Programme for Rare Diseases

Rodrigue Laurent
Press Officer

Marta Mosca 
University of Pisa
ERN ReCONNECT Coordinator

Anders Olauson
Chair, NGO Committee
for Rare Diseases

Luca Pani
Professor of Psychiatry,
University of Miami &
Former AIFA Director

Paola Ricci
The PHARI Fund of the Fondation Philantropia

Mark Rothera
President & Chief Executive Officer,
Silence Therapeutics

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

Geske Wehr
EURORDIS Board of Directors &
ACHSE (German Alliance of Rare Diseases)

Durhane Wong-Rieger
Chair, Rare Diseases International