About the EURORDIS Black Pearl Awards

The seventh edition of the EURORDIS Black Pearl Awards will take place on 20 February 2018 at Le Plaza Hotel, Brussels.

The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February. Since 2012, EURORDIS-Rare Diseases Europe has organised this event to 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. Nominations are submitted by the general public and shortlisted by an ad hoc committee. The winners are selected by the EURORDIS Board of Directors, based on the criteria for each category.

The winners of the Awards are announced at the Ceremony on 20 February 2018 at Le Plaza Hotel, Brussels.

Ticket sales and corporate donations go towards supporting EURORDIS’ activities in the following areas:
• Increasing public awareness through information about rare diseases;
• Breaking the isolation of rare disease patients and their families;
• Empowering leaders of rare disease communities through training, capacity-building activities and exchange to foster their research, therapeutic development and health policy activities.

Find out more about EURORDIS’ international activities.

 

Why is the event called the “EURORDIS Black Pearl Awards”?

The EURORDIS Black Pearl Awards are presented to individuals, organisations and companies who dedicate their lives to making a difference for the rare disease community.

The formation of a natural black pearl is extremely rare. Black pearls are widely considered as the most valuable and beautiful kind of pearls in the world. Just like these pearls, the recipients of the EURORDIS Black Pearl Awards are unique and deserve our recognition for the work that they do. Despite important advances, the rare disease community continues to face enormous challenges. The work and achievements of the awardees are of paramount importance to improving lives and finding cures for people living with a rare disease.

Read more about previous awardees.

Why in February?

The EURORDIS Black Pearl Awards takes place in February to celebrate Rare Disease Day; a EURORDIS initiative to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Over the past 10 years, Rare Disease Day has become an internationally recognised awareness-raising campaign, with events taking place in over 90 countries and regions, uniting millions of people living with a rare disease worldwide.

When and where?

Hotel Le Plaza

The next EURORDIS Black Pearl Awards will take place on 20 February 2018 at Le Plaza Hotel, in Brussels, Belgium. The programme will be announced shortly.

 

 

Rare Disease Day Ambassador

Sean Hepburn Ferrer

Sean Hepburn Ferrer, the eldest son of the late actress and philanthropist, Audrey Hepburn, has been the Ambassador of Rare Disease Day since 2014.

Audrey Hepburn passed away from a rare form of cancer pseudomyxoma adenocarcinoma, which affects only one in a million people. Her family had to deal with the frustration of a long and difficult diagnosis, as well as the lack of any available treatment.

Sean quotes his mother’s words of solidarity in saying, “alone we can do so little, but together we can do so much” to describe the power of the rare disease community to speak with a united voice and to bring patients out of isolation.

Sean engages in many philanthropic activities and contributes to raising awareness of the impact of rare diseases on an international scale as the Ambassador of Rare Disease Day.

Honorary Patrons

Black Pearl Committee