As part of the celebrations for Rare Disease Day, EURORDIS will be holding the 2026 edition of their Black Pearl Awards on Tuesday, 24 February in Brussels and online. These awards are meant to honour key actors in the rare disease field who are driving positive change, with awardees being announced gradually leading up to the ceremony. So far, the Volunteer Award and Members Award honourees have been announced.
Allison Watson has received the Volunteer Award in recognition of her leadership and commitment to improving the lives of people living with rare epilepsies. In addition to her work uniting diverse communities through her founding of the UK Rare Epilepsies Together Network in 2021, Allison has been highly involved at the European level as ePAG Lead within ERN EpiCARE and as the ePAG Steering Committee member in the early days of the ERNs.
This year’s Members Award has been awarded to the Ehlers-Danlos Society. This award is presented each year to a EURORDIS member patient organisation which has demonstrated innovative methods in patient support or advocacy. This year, the Ehlers-Danlos society is being recognised for their global leadership in advancing research, education, advocacy and support for individuals affected by the Ehlers-Danlos syndromes and hypermobility spectrum disorders.
Submissions are also currently open for the Photo Award 2026. This annual prize is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. Initial submissions are welcome from all nationalities, ages, and diseases, from which five finalists will be selected. These finalists then enter a public voting round, with the winner announced during the Black Pearl Awards. Submissions close on 30 January 2026, and voting will open on 9 February.
"The world has the colours we paint," winner of the 2025 Photo Award (via EURORDIS)
More information about how to submit your photo is available on the Black Pearl Awards website. If you want to enter but find yourself in need of inspiration, you can view last year’s entries here.
Finally, voting is now open for this year's Social Media Award, which celebrates advocates and influencers who raise awareness for rare diseases through innovative and impactful content. Learn more about this year's finalists and cast your vote here.
