From powerful conversations, podcasts and presentations in Westminster to advocates, families and organisations coming together to raise awareness.

Rare Disease Day is observed every year on the 28th February (or on the 29th if it falls on a leap year), the rarest day of the year!

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse, but united in purpose. Rare Disease Day was set up and is coordinated by EURORDIS (Rare Diseases Europe) and 65+ national alliance patient organisation partners. Here in the UK, Genetic Alliance UK coordinates many of the events and awareness raising in the UK throughout Rare Disease Day.

This year’s theme was  All About Equity.
Through our Breaking Down Barriers Network we have been focusing on what equity means to you. We have been listening to people with lived experience of rare and/or genetic conditions, to capture what equity means in real life, from healthcare, education provision and our identity. With one very important question at the heart; What needs to change in the UK to make life fairer?

We have created All About Equity podcasts where you will hear from people talking about what matters most to them. Including giving their top tips and ways we can all make a difference to make lives fairer and more equitable in the future.

Pop along to the Rare Disease Day 2026 section of the Breaking Down Barriers website to see these wonderful insights from the community.

Rare Disease Reports have been Launched
Kerry and Sophie attended the Westminster Rare Disease Day reception at the House of Commons.
It was clear from listening to the excellent speakers Alison and Sophie, (Breaking Down Barriers Lived Experience Coordinator) that much more needs to be done to make things more equitable for people living with rare conditions. A huge thank you to Genetic Alliance UK for organising such a fabulous event and for highlighting lived experiences in their Rare Disease Day 2026 report.
‘Equity for rare: Delivering fairer healthcare systems for people with rare conditions’
https://geneticalliance.org.uk/wp-content/uploads/2026/02/Equity-for-Rare-RDD-2026-report.pdf

Minister Ashley Dalton announced the publication of the 2026 England Rare Disease Action Plan that has now been published and can be found here England Rare Diseases Action Plan 2026 – GOV.UK
https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2026

Sue Farrington also shared information about the development of The NICE Quality Standards for Rare Conditions. A very big thank you to Sue and members of the wider rare disease community for their excellent leadership on this great work.
NICE Quality Standard for Rare Diseases https://www.nice.org.uk/guidance/qs214

Showing Your Stripes
The ASUK and Bardet Biedl Syndrome UK teams joined up with the Centre for Rare Diseases at Queen Elizabeth Hospital Birmingham who were ‘showing their stripes’ in the main atrium to celebrate Rare Disease Day.
Information stands were set up to raise awareness of rare conditions, alongside the Advanced Therapy Treatment Centre (ATTC) network, who shared information about advanced treatments in rare disease care.

Thank you
Thank you to everyone who shared their experiences and insights as part of this campaign and for helping us show what equity really looks like.
If you’d like to share your experiences in a safe and supportive space — either through a future podcast or in one of our Focus Groups — we’d really welcome you. Please feel free to reach out to Catherine.

To get involved in future project and campaigns and share your experience, please email Catherine