The Rare Disease Day 2026 campaign is coming soon!
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 rare conditions from across the UK to help us understand what equity means to them.
We will be sharing these insights through comprehensive factsheets and a policy report that will shine a light on systemic inequities while showcasing the research and initiatives that prove a fairer future is possible.
Equity may mean different things to different people, but we are united in working to end the diagnostic odyssey and securing timely access to specialised care and innovative treatments.
We want people affected by rare conditions to lead the conversation. To help you use your voice, we are developing an RDD 2026 Advocacy Pack. Whether you are speaking to your local MP, sharing your journey on social media, or engaging with the press, this toolkit will provide all you need to drive real change.
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Check back here on 30 January 2026 to find out more
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