Looking back on Rare Disease Day 2025
On 28 February 2025, Rare Disease Day brought people around the world together to celebrate the rare disease community’s strengths, highlight recent progress that has been made, and advocate for solutions to the barriers which continue to prevent people living with a rare disease from accessing timely and appropriate diagnosis and care. Across continents, buildings, monuments and homes were lit up in support of the annual #LightUpForRare campaign.
At the European level, a special event was organised at the European Parliament by MEPs Stine Bosse and Adam Jarubas, in collaboration with EURORDIS. The event, titled “Impact of Rare Diseases: More than you can imagine,” was an opportunity for policymakers, patient advocates, and healthcare leaders to discuss the challenges facing the rare disease community and outline actionable policy solutions at the European level. A recording of the event is now available on YouTube.
In honour of Rare Disease Day, the European Commission published several new resources presenting their work on rare diseases and celebrating the accomplishments of the European Reference Networks (ERNs). These resources can be accessed via the links below:
- Factsheet: How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)
- Factsheet: EU delivering on rare diseases for patients and families
- Booklet: European Reference Networks, a success story for patients living with a rare disease
Several national rare disease organisations also took advantage of the visibility generated by the day to organise local events. Rare Voices Australia, the national peak body for Australians living with a rare disease, held a Parliamentary Event during which stakeholders were able to speak directly with Members of Parliament and highlight the challenges associated with rare diseases. Rare Disorders New Zealand also marked the occasion, which coincided with the organisation’s 25th anniversary, by holding an awards ceremony to recognise actors who have spearheaded initiatives to improve the lives of people living with a rare disease in New Zealand.
Finally, the Orphanet Journal of Rare Diseases published a number of blog posts ahead of and on Rare Disease Day. These articles discuss a wide range of topics, including patient and family involvement in clinical trials, more inclusive approaches to research, and the importance of amplifying patient voices.
For more information about these and other events which took place as part of Rare Disease Day 2025, visit the links below.
Photo credit: Queen’s University Belfast – Belfast, Northern Ireland; Hôtel de Ville – Ville du Tampon, La Réunion; CN Tower – Toronto, Canada; La Plateforme Maladies Rares – Paris, France; National Institutes of Health – Bethesda, USA
