In anticipation of Rare Disease Day 2025, EURORDIS held their annual Black Pearl Awards ceremony on 24th February, in Brussels and online. The ceremony was attended by a diverse group of hundreds of patient advocates, healthcare professionals, industry stakeholders, policymakers, artists, and other stakeholders.
Since the last edition of OrphaNews, two additional awardees were announced:
- Professor Miikka Vikkula, Scientific Award: Professor Vikkula is a researcher whose work focuses primarily on vascular anomalies. This award recognises his pioneering discoveries and efforts in research and trial development, as well as his involvement in working groups at the international level.
- Birthe Byskov Holm, Lifetime Achievement Award: This award recognises Birthe's lifelong dedication to addressing the needs of people living with a rare disease through advocacy, particularly within the osteogenesis imperfecta community. Among a long list of accomplishments, Birthe is the Co-founder and President of Rare Diseases Denmark, and has served important roles on the EURORDIS Board of Directors, Expert Committees at the Danish Medicines Council, and the EMA's Committee for Orphan Medicinal Products.
The laureates of the Social Media and Photo Awards were also announced during the ceremony.
Yamina Hsaini (@yaminahsaini) was honoured with this year’s Social Media Award following a public vote. Living with gastroparesis since 2014, Yamina uses platforms such as Instagram and TikTok to share the physical, emotional and medical challenges of the diagnostic odyssey, and living with a rare disease more broadly.
The other award announced during the ceremony, the Photo Award, was also decided by public vote. The 2025 prize goes to “The world has the colours we paint” (“O mundo tem as cores que a gente pinta”), which depicts autoimmune encephalitis in Brazil.
Held annually since 2012, the Black Pearl Awards are meant to honour key actors in the rare disease field who are driving positive change. Use the links below to learn more about the awards, and view the full list of this year’s awardees. All money raised through the awards goes towards Rare Disease Day.
