Rare Disease Day 2026
Thank you to our industry supporters, who have provided funding via sponsorships and grants to Genetic Alliance UK in support of our Rare Disease Day 2026 campaign. These organisations have had no involvement in the development of the campaign, or any of its content. Without their support our campaign would not have been possible.
Equity for rare
For Rare Disease Day 2026, we’re demanding equity.
There are 3.5 million people living with a rare condition in the UK. Everyone with a rare condition deserves fair and equitable care, no matter how rare their condition is. Equitable care means addressing individual needs, not treating everyone the same.
Genetic Alliance UK are exploring what equity looks like for people with rare conditions. We’ve been listening to people affected by genetic, rare and undiagnosed conditions from across the UK to help us understand what equity means to them.
What does equity look like for rare conditions?
This year’s Rare Disease Day theme is equity. Between November 2025 and February 2026, we ran a survey and a series of workshops exploring what equity really means to people living with rare conditions. We’d like to say a huge thank you to our members for completing and sharing the survey, and to Breaking Down Barriers for their support in delivering our workshops.
The findings of our survey and workshops have been beautifully captured by illustrator and paramedic Rose Matheson.
Feel free to view, download, share and print Rose’s ‘what does equity mean to you’ illustration to help spread the word.
Equity for rare policy report
Equity for rare: Delivering fairer healthcare systems for people with rare conditions is Genetic Alliance UK’s Rare Disease Day policy report. It presents findings from our community consultation into what healthcare equity means for people living with rare conditions.
We found that people with rare conditions experience profound healthcare inequity because healthcare systems are simply not designed with them in mind. The experiences and views shared were illustrated by Rose Matheson (illustrator and paramedic, Scotland).
The report explains that healthcare systems often treat rare conditions as a low priority. Equitable care is further limited by a lack of evidence and low levels of clinical familiarity. These systemic challenges frequently intersect with ethnicity, gender, and socioeconomic status, deepening existing inequities in healthcare.
To deliver a fairer healthcare system, we call on the UK governments to:
- Deliver a UK-wide map of all 7,000 rare conditions via funded rare conditions registries.
- Close the evidence gap through fair and balanced research investment.
- Mandate system-wide accountability to stress-test policies against rare conditions.
- Embed rare conditions into mainstream healthcare delivery
- Commit to a bold successor to the UK Rare Diseases Framework.
Information Sheets
We have created a series of information sheets which explain inequity in the context of rare conditions. The information sheets share some of the messaging from our Equity for rare: Delivering fairer healthcare systems for people with rare conditions report, alongside quotes from our community survey.
Download our Rare Disease Day 2026 advocacy pack
Our Rare Disease Day 2026 advocacy pack contains everything you need to raise awareness and demand equity for the rare community. Resources in the pack include school toolkits, template letters to local representatives, a guide on writing to and engaging with local media and raising awareness in lots of different ways. Get involved!
Download our Rare Disease Day 2026 promo pack
We know that when we use our voices collectively, our message is stronger. Copy our social media post templates and share them from your own channels, alongside our downloadable Rare Disease Day 2026 graphics, available in both portrait format (for Instagram, LinkedIn and Bluesky) and landscape graphics (for Facebook, LinkedIn and X).
Tag us in your social media posts so we can engage with and amplify your messaging, using the hashtag #RareDiseaseDay #rarequity
Instagram | @RareDiseaseUK
Facebook | @GeneticAllianceUK
LinkedIn | @genetic-alliance-uk
Bluesky | @geneticallianceuk.bsky.social
Want to raise awareness on social media?
We have created digital assets/graphics using the EURORDIS brand to share on your social media. There are lots of options to choose from – download your favourites and start sharing.
Download portrait format graphics (for use on Instagram, LinkedIn, etc)
Download landscape format graphics (for use on Facebook, LinkedIn, X etc)
Want ideas for social media posts? Download our Rare Disease Day 2026 social media promo pack for easy-to-use social media templates you can copy/paste and share alongside our graphics.
Rare Disease Day 2026 flyer
Download our Rare Disease Day 2026 flyer and you can attach it to emails, print it out to add to noticeboards and share widely to raise awareness of Rare Disease Day and the rare community.
Parliamentary Receptions
One of the ways that we mark Rare Disease Day is through our parliamentary receptions in Westminster, Holyrood and The Senedd. These receptions are an opportunity for the rare conditions community to come together and for parliamentarians to learn how they can drive changes in policy to improve the lives of people affected by rare conditions.
Each parliamentary reception will feature an exhibition of selected stories from people with rare conditions sharing their experiences of inequity in accessing healthcare.
Receptions are hosted by a member of the respective parliament and feature a programme of speeches, including a person sharing their lived experience of rare conditions and a representative of Genetic Alliance UK who will present the findings of the Rare Disease Day policy report exploring what equity for rare conditions looks in the context of delivering healthcare in the UK.
At each reception, a government minister, or official, will provide a keynote speech.
- The Senedd: Wednesday 25 February 2026 (tickets available via Eventbrite)
Sponsored by John Griffiths MS (Member for Newport East) with a keynote speech from Mabon ap Gwynfor MS, Plaid Cymru Health, Social Care and Housing Spokesperson - Westminster: Tuesday 24 February 2026 (NO TICKETS AVAILABLE)
Sponsored by Peter Dowd MP (Member for Bootle) with a keynote speech from Ashley Dalton, Parliamentary Under-Secretary of State for the Department of Health and Social Care - Holyrood: Thursday 19 February 2026 (NO TICKETS AVAILABLE)
Sponsored by Bob Doris MSP (Member for Maryhill and Springburn)with a keynote speech from Jenni Minto, Minister for Public Health and Women’s Health
We also host a virtual reception bringing together civil service representatives from England, Scotland, Wales and Northern Ireland to provide updates on progress in the last year for rare conditions. Register for our Joint Nation Online Event taking place on Thursday 5 March 2026, 10:00-12:00.
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