Get ready for Rare Disease Day 2026!
As we head into February, the rare disease community is gearing up to celebrate Rare Disease Day 2026 on 28 February. Coordinated by EURORDIS, this yearly event is a key moment when all members of the community can make their voices heard and add momentum to important advocacy work.
Groups around the world are organising events for their local rare disease communities. To learn more about events happening near you, take a look at the ‘Events Near You’ tab in your local language on the Rare Disease Day website. You can also help build awareness online by posting your own photos and experiences under the hashtag #RareDiseaseDay, or by sharing a range of downloadable resources, available in a number of languages.
To kick off the festivities, EURORDIS is hosting their annual Black Pearl Awards on 24 February in Brussels, Belgium and online. These awards are meant to honour key actors in the rare disease field who are driving positive change, with awardees being announced progressively ahead of the ceremony. Since the last edition of OrphaNews International, the following individuals and groups have also been named as awardees:
- Dr Ágnes Cser, Leadership Award: Dr Cser has been a member of the European Economic and Social Committee (EESC) since 2004. This award recognises her long-standing commitment to advocating for the needs of people living with a rare disease in Europe, including recent efforts to increase political commitment to a European Action Plan for Rare Diseases.
- Jakub Dvořáček, Policy Maker Award: As Deputy Minister of Health for the Czech Republic since 2022, Jakub Dvořáček has been a driving force in shaping both national and European strategies for rare disease patients. He receives the Policy Maker Award in honour of these efforts, notably his organisation of the Expert Conference on Rare Diseases during the Czech EU Presidency in 2022, which laid the groundwork for a European Action Plan.
- Professor Hélène Dollfus, Scientific Award: Professor Dollfus has led pioneering research in rare eye disorders, and has fostered transborder scientific collaboration through her leadership of the French Rare Sensory Diseases Network (SENSGENE) and the ERN-EYE. This award recognises her commitment over more than 20 years to improving the understanding and treatment of rare genetic eye diseases.
- Jakub Gietka, Young Advocate Award: Jakub Gietka is working to shape inclusive systems for people living with a rare disease at national and European levels, by transforming lived experience into systemic advocacy.
- The Remarkable Life of Ibelin, Media and Awareness Raising Award: This award recognises a creative or artistic project which increases global understanding of rare diseases. This year, it is awarded to The Remarkable Life of Ibelin, a Norwegian documentary which tells the story of a young man living with Duchenne muscular dystrophy.
- The Bulgarian Huntington Association’s Support Centre for Families with Rare Diagnoses in Sofia, Holistic Care Award: The Centre is recognised for its exemplary person-centred, multidisciplinary approach to supporting individuals and families affected by rare diseases.
- Saventic Health, Company Award for Health Technology: Saventic Health is being recognised for their development of artificial intelligence algorithms which are helping to expedite the diagnosis of rare diseases.
Recent Black Pearl Awardees (via EURORDIS)
Alongside the awardees announced ahead of the ceremony, two awards will be determined by a public vote and announced on the night of the ceremony. The Photo Award invited members of the public to submit photos which share their rare disease stories, from which five finalists will be chosen. Online voting on the finalists will open on 9 February. Voting is also currently open for the Social Media Award, which celebrates advocates and influencers whose content amplifies the voices of the rare disease community. You can learn more about the 3 finalists and cast your vote for this award here. Voting for both awards will close ahead of the awards ceremony on 24 February.
