EURORDIS Black Pearl Awards

The EURORDIS Black Pearl Awards is an annual awards ceremony that takes place every February to celebrate advancements in the rare disease field. 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.

In 2021, we’ll take a moment to reflect upon the far-reaching impact this event has had on the community over the past years with our 10TH ANNIVERSARY SPECIAL ONLINE EDITION taking place on WEDNESDAY, 24 FEBRUARY 2021

The EURORDIS Black Pearl Awards and Rare Disease Day

RARE DISEASE DAY is a EURORDIS initiative to raise awareness about rare diseases and their impact on patients’ lives. Over the past 13 years, Rare Disease Day has become an INTERNATIONALLY RECOGNISED AWARENESS-RAISING CAMPAIGN with events
taking place in over 100 countries and regions, uniting millions of people living with a rare disease worldwide. The EURORDIS Black Pearl Awards is the official EURORDIS event for Rare Disease Day and takes place in February to mark the occasion.

What is EURORDIS-Rare Diseases Europe?

EURORDIS is a unique, non-profit alliance of over 900 rare disease patient organisations from more than 70 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

EURORDIS-Rare Diseases Europe works across borders and diseases to improve the lives of people living with a rare disease.

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.

The impact of this event

Net proceeds raised from this event help support 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.

Who attends?
Hundreds of key figures of the rare disease community – philanthropists, royalty, national and international public officials, rare disease patients and advocates, clinicians, researchers, healthcare sector executives
and media… participate in this event.

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

Programme

17.00 – 18.30 Live Awards Ceremony
From 18.30 Networking: meet the awardees and mingle

Please send any questions to Martina Bergna,
Events Manager, EURORDIS Black Pearl Awards
martina.bergna@eurordis.org