Looking back on Rare Disease Day 2026
On 28 February 2026, 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.
In honour of Rare Disease Day, the European Commission published updated several 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)
- European Reference Networks: updated individual factsheets
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. The United States Food and Drug Administration (FDA) also organised a public meeting on the theme “Moving Forward. Looking Ahead. An Event for Patients,” which aimed to explore ways to engage and collaborate with patients and their communities to support and accelerate the development of medical products for rare diseases. A recording of the event is now available on YouTube.
For more information about these and other events which took place as part of Rare Disease Day 2026, visit the links below.
Photo credit: Alliance maladies rares | FDA | CN Tower | Mykola Kabluka | Oxford-Harrington Rare Disease Centre | LifeArc Centre
