Black Pearl Awards Homepage

Taking place in February, which also marks the occasion of Rare Disease Day, our annual EURORDIS Black Pearl Awards celebrate the outstanding achievements of people living with a rare disease, along with those who go that extra mile to make a difference to their lives.

The awards celebrate hard work, innovative thinking and dedication to the rare disease community.

Since 2012, EURORDIS-Rare Diseases Europe has organised this event to recognise the major achievements made for and by the rare disease community, and the commitment of patient advocates, patient organisations, policymakers, scientists, companies, and others.

As of February 2023, the awards have become a full hybrid event, allowing people from across our community to attend the in-person ceremony and gala dinner in Brussels, or to connect online from anywhere in the world. This unique evening offers a blend of celebration, learning, sharing experiences, and stunning artistic performances!

The 14th edition of the Awards will take place on Monday, 24 February 2025 at the Cardo Hotel in Brussels. Registration to attend the event will open in November.

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2024 Ceremony

The 13th edition of the awards took place on Tuesday, 20 February 2024, in Brussels and online, bringing together hundreds of people living with a rare disease, patient advocates, policymakers (including representatives from the European Parliament and the European Commission), scientists, healthcare professionals, industry representatives, and more, from all around the world.

2,000+

Nominations received

2,457

Total participants

Countries

114

Award winners

WHEN ARE THE AWARDS?

The EURORDIS Black Pearl Awards take place each year in February to mark the occasion of Rare Disease Day, the international awareness-raising campaign for rare diseases coordinated by EURORDIS. Our most recent edition of the awards were hosted in Brussels and online on Tuesday 20 February 2024.

WHY ARE THEY THE 'BLACK PEARL' AWARDS?

Tahitian black pearls are cultivated around the waters of French Polynesia. Highly prized for their unique and exotic colour, their formation is extremely rare. Like these pearls, our Black Pearl Award recipients are unique, deserving our recognition.

WHAT'S THE HISTORY OF THE AWARDS?

The Black Pearl Awards have been celebrating outstanding achievements in the community since 2012. After nine on-site and two online editions during COVID-19, the awards became a hybrid event in February 2023, welcoming hundreds in Brussels and on our online platform.

WHO HOSTS THE EURORDIS BLACK PEARL AWARDS?

Dr Carrie Grant is the official Master of Ceremony for the EURORDIS Black Pearl Awards.

Dr Carrie Grant MBE (hc) is a BAFTA award-winning broadcaster, vocal coach and advocate. Her TV and music career has spanned over 35 years. She was awarded a MOBO award in 1998 and a BASCA in 2008 for her lifetime services to the music industry. She has been awarded an MBE in 2020 for services to Music, Media and Charity and also has two honorary doctorates (University of Bedfordshire 2018, Middlesex University 2020).

She has both the biggest selling vocal coaching book and online course in the world. She is currently a reporter for BBC‘s “The One Show,” hosts a podcast, “In Good Company” and co-hosts Radio London’s Saturday Breakfast Show alongside her husband, David Grant MBE.

Carrie is President of the Unite Union for Community Practitioners and Health Visitors (CPHVA) as well as being the Patient Lead for the College of Medicine and an Ambassador for Crohn’s & Colitis UK, The National Autistic Society and The Diana Award. She is Mum to four children; three are birth children and one was adopted and all have special needs. Carrie is a keen campaigner and contributes to many forms of media on the subject of Health and Education.