10th Black Pearl Awards ceremony united people from across the globe to honour 18 exceptional Awardees

23 April 2021, Brussels – Over 450 people from 55 countries joined EURORDIS-Rare Diseases Europe as we celebrated the outstanding achievements of our 18 Awardees. In spite of the COVID-19 pandemic, the special tenth-anniversary edition of the EURORDIS Black Pearl Awards, held online on 24 February 2021, succeeded in bringing together the multi-stakeholder community, inspiring and empowering many.

This year marks the first time the EURORDIS Black Pearl Awards took place online, as the global pandemic continues to affect our societies, reshaping the way we communicate and interact with each other. With millions around the world experiencing lockdown measures, the online platform brought the ceremony to everyone’s home.

Throughout the ten-year history of the event, EURORDIS has ensured that the patient voice is heard at both the European and global level. The ceremony has created a feeling of togetherness of patients, policy makers, and the private sector, raising awareness for people with rare diseases and contributing to building more inclusive, compassionate and sustainable communities around the globe.

Every year, we witness what the Black Pearl Awards mean to each of our recipients and how they change their lives. Much more than a symbol, the Awards signify the highest standards of achievement, inspiring thousands of patient advocates, scientists, decision makers and private companies to contribute to promoting the best interests of people living with a rare disease in Europe and beyond. Such recognition has an undeniable effect on raising public awareness of rare diseases and creates unique opportunities for advancing research and moving the rare disease agenda forward.

"Four years ago, my organisation received a EURORDIS Members Award. This Award was an amazing achievement for our organisation because it gave us the visibility and the interest and attention of researchers, physicians and industry," – Julian Isla, Scientific Director at the Dravet Syndrome European Federation.

By organising this Rare Disease Day landmark event online, EURORDIS successfully brought key policy makers, researchers, clinicians, patient advocates, patients and the private sector together to celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.

 “It is my pleasure to support the tenth anniversary of the EURORDIS Black Pearl Awards as a unique occasion to celebrate the excellence and leadership of this year’s inspiring awardees and their achievements. Their accomplishments cover new repurposed treatments available to patients across Europe, ground-breaking research as well as unrelenting work as volunteers representing rare diseases,” – Her Royal Highness Princess Astrid of Belgium.

The recipients of the EURORDIS Black Pearl Awards 2021, presented with their Awards at the online ceremony held on 24 February, are:

EURORDIS Young Patient Advocate: Rachele Somaschini, Italy

EURORDIS European Rare Disease Leadership Award: Dr. Enrique Terol, Victoria Hedley and Dr. Birutė Tumienė

EURORDIS Policy Maker Award: Kateřina Konečná, Czech Republic

EURORDIS Scientific Award: Prof. Alain Hovnanian, France

EURORDIS Volunteer Awards: Ingunn Westerheim, Norway, and Rebecca Tvedt Skarbeg, Norway

EURORDIS Members Award: AKU Society, UK

EURORDIS Company Award for Innovation: Orchard Therapeutics, UK

EURORDIS Company Award for Patient Engagement: Takeda, Japan

EURORDIS Company Award for Health Technology: Epihunter, Belgium

EURORDIS Visual and Audio Media Award: Noémie Desquiotz-Sunnen, Luxembourg

EURORDIS Written Media Award: Ana Ilić, Serbia

EURORDIS Lifetime Achievement Award: Milan Macek, Czech Republic

EURORDIS Photo Award: First place – “Together Forever” by Pavol Kulkovský, Slovakia; Second place – “O.I. Can” by Khim Bahadur Lamichhane, Nepal; Third place – “Living With A Rare Disease” by Díana Júlíusdóttir, Iceland

The EURORDIS Black Pearl Awards Ceremony takes place in February to mark the occasion of Rare Disease Day.

The Black Pearl Awards recognise the major achievements and outstanding commitment of patient advocates, patient organisations, policy makers, scientists, companies and media who strive to make a difference for the rare disease community.

There were hundreds of nominations from 38 different countries worldwide.

#EURORDISAwards2021 #BlackPearl


EURORDIS-Rare Diseases Europe

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 956 rare disease patient organisations from 73 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services. Follow @eurordis or see the EURORDIS Facebook page. For more information, visit eurordis.org.

Rare Disease Day

A patient-led campaign, Rare Disease Day was launched by EURORDIS and its Council of National Alliances in 2008 and brings together millions of people in solidarity. EURORDIS coordinates the global community in organising Rare Disease Day, which takes place on the last day of February each year to raise awareness of the impact that rare diseases have on over 300 million people around the world. #RareDiseaseDay

Rare diseases

The European Union considers a disease as rare when it affects less than 1 in 2,000 citizens. Over 6,000 different rare diseases have been identified to date, affecting an estimated 30 million people in Europe and 300 million worldwide. Due to the low prevalence of each disease, medical expertise is rare, knowledge is scarce, care offering inadequate and research limited. Despite their great overall number, rare disease patients are the orphans of health systems, often denied diagnosis, treatment and the benefits of research.

Press contact

Stanislav Ostapenko, Communications Manager
EURORDIS-Rare Diseases Europe
+33 1 56 53 52 61

Page created: 23/04/2021
Page last updated: 23/04/2021
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