Black Pearl Awards 2025: EURORDIS honours changemakers of the rare disease community
February 202524 February 2025, Brussels – EURORDIS-Rare Diseases Europe is proud to announce the conclusion of the 14th edition of the Black Pearl Awards, celebrating the extraordinary individuals, organisations, and companies driving progress for people living with a rare disease.
This year’s event brought together hundreds of attendees, both in Brussels and online, including patient advocates, healthcare professionals, policymakers, industry leaders, and artists.
The ceremony was hosted by Dr. Carrie Grant MBE, a BAFTA award-winning broadcaster, vocal coach, and outspoken advocate for health equity and disability rights, serving as the official Master of Ceremonies for the Black Pearl Awards since 2018. The evening was further enriched by captivating performances from internationally acclaimed soprano Victoria Oruwari, a classically trained singer whose artistry and advocacy as a blind performer have made her a powerful voice for inclusivity in the arts.
Held each February in the lead-up to Rare Disease Day, this year taking place on 28 February, the Black Pearl Awards highlight the tireless work of those breaking barriers, advancing research, shaping policy, and fostering solidarity with and within the rare disease community.
Reflecting on the evening’s awardees, Virginie Bros-Facer, Chief Executive Officer of EURORDIS, said:
The strength of the rare disease community lies in the diversity of ways its people and organisations champion the cause and work to address its unmet needs.
Tonight, we have celebrated those pushing the boundaries of science, where pioneering genetic research is unlocking new treatments for vascular anomalies. We have honoured advocates who amplify the voices of people with disabilities on global stages, championing accessibility and equal rights. And we have recognised the power of bold and creative awareness-raising, demonstrated in a campaign that mobilised tens of thousands of people through a major national television event in Italy.
The ingenuity, dedication, and successes of tonight’s awardees remind us that anyone can play a role in making the world a better and fairer place for people living with a rare disease.
The 2025 Black Pearl Awards have recognised outstanding contributions across research, advocacy, policy, and innovation. This year’s recipients were:
- Lifetime Achievement Award – Birthe Byskov Holm
- Policy Maker Award – Stella Kyriakides
- Scientific Award – Prof. Miikka Vikkula
- Leadership Award – Dr Violeta Stoyanova-Beninska
- Volunteer Award – Dr Pauline Evers
- Members Award – Latvian Alliance of Rare Diseases
- Young Advocate Award – Jane Velkovski
- Company Award for Patient Engagement – Ultragenyx and Mereo BioPharma
- Company Award for Health Technology – No Isolation
- Media and Awareness Raising Award – #UNIAMOleforze (UNIAMO – Italy’s Rare Disease Federation)
- Social Media Award – Yamina’s Life (@yaminahsaini)
- Photo Award – ‘The world has the colours we paint’ (‘O mundo tem as cores que a gente pinta’).
For more details on this year’s awardees and past winners, visit the Black Pearl Awards website.
About EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 1,000 rare disease organisations from 74 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By connecting people, families, and rare disease 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 services.
Contact
Julien Poulain
Communications Manager
EURORDIS-Rare Diseases Europe
Julien.poulain@eurordis.org
+33 6 42 98 14 32