EURORDIS Black Pearl Awards

Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community.

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards 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.

The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives.


The eleventh edition of the Awards took place online on Tuesday, 8th February 2022 and brought together hundreds of persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more from all around the world.


Nominations received


Total Participants




Award Winners

Previous Recipients

When are the EURORDIS Black Pearl AwardS?

The EURORDIS Black Pearl Awards takes place in February, marking Rare Disease Day.

Rare Disease Day is the international awareness-raising campaign for rare diseases, coordinated by EURORDIS.

Thousands of events take place in over 100 countries and regions, uniting millions of people living with a rare disease worldwide.

Follow us on twitter

With The honorary support of

With Thanks to our 2022 Donors