Rare Disease Day 2025 is taking place on Friday 28 February 2025. Read on to hear all about our plans to make it a huge success and see how you can support the campaign and get involved.
‘More than you can imagine: an anthology of rare experiences’
Genetic Alliance UK will be publishing ‘More than you can imagine: an anthology of rare experiences’ as part of our Rare Disease Day 2025 campaign.
The anthology will be published online and will share a wide range of experiences from the genetic, rare and undiagnosed communities through creative works such as poetry, stories, photos and drawings. The creative works can be inspired by the phrase ‘more than you can imagine’, for example:
- a poem about managing medication could be titled ‘more complicated than you can imagine’
- a drawing of friends could be called ‘more connected than you can imagine’
- a short story about medical appointments could be called ‘more waiting rooms than you can imagine’
We will launch the anthology at our Rare Disease Day 2025 events and we’re currently looking for submissions from our community. Sharing your submission is simple, take a look at our handy guide and complete our quick-and-easy form.
February Fundraising
With the help of our incredible fundraisers we’ve made huge steps to support the lives of the 3.5 million people in the UK living with a rare condition. This Rare Disease Day, we are asking if you can continue that support and make 2025 a year that we achieve BIG!
Every penny you raise will help us support everyone affected by a genetic, rare, and undiagnosed conditions. People living with a condition, those seeking a diagnosis, family and friends, carers and the healthcare professionals. Every effort helps!
We are looking for people to host a fundraiser in February, and we’re here to help. There are plenty of running events taking place across the UK over the month. Take a look and register for something that interests you.
Not a runner? You can set up your own challenge or fundraiser to raise money for Genetic Alliance UK. We’d love to hear your ideas and see how we can help – [email protected].
Our Rare Disease Day report
Rare Disease Day is a milestone for the government strategy on rare conditions, the UK Rare Diseases Framework. 2025 is the final year of the existing Framework and to date, there has been no commitment from the new UK government to a continuation of the ambitions of the Framework.
Genetic Alliance UK’s Rare Disease Day policy report will demonstrate the extent of unmet need that continues to exist in the rare condition community. We will make the case for a new UK-wide government strategy on rare conditions and identify opportunities for the Government to support people with rare conditions in the current policy landscape and in the context of the new NHS 10 year plan.
Westminster Rare Disease Day 2024 event attendeeWhat a very useful and very informative event... I was able to make some very good connections as well as seeing people I already knew.
Schools toolkit
For Rare Disease Day 2024 we designed a new school toolkit for children between the ages of 8-12, in collaboration with EURORDIS. This year we’re looking for help to get the toolkit into schools to educate future generation and support a brighter future for those living with rare conditions.
If you have a child at school age please help share the school toolkits made by EURORDIS. There are versions for children aged 5 to 6, 7 to 8 , our toolkit for children aged 8 to 12, and there is one made for teenagers aged 12 to 16.
Rare Disease Day 2025 Receptions
Coming soon
Wales Rare Disease Day Reception 2024 event attendeeFeeling empowered after last night's reception. Let's do this!
Work is well underway to prepare for our annual Rare Disease Day receptions in Westminster, Holyrood and The Senedd. In 2025, our reception events will include.
- Keynote speeches from members of our community and policy makers from across the UK
- The launch of a new policy report from Genetic Alliance UK
- The launch of our ‘More than you can Imagine’ anthology and an exhibition of creative works from our community
We’ll be releasing dates and tickets soon so keep an eye on our socials and sign up to Genetic and Rare News to be one of the first to apply for your ticket.
We can’t wait to receive your creative submissions for our anthology and if you have any questions about Rare Disease Day 2025 then please visit our website or contact us via [email protected]
You can take a look at the photos from our 2024 events on our Flickr account.
Share our social media assets
Download our assets, adapted from EURORDIS’ downloads to highlight our UK campaign. Simply click the download button and post them straight to your social media. Don’t forget to tag us in your posts.
Support our campaign
By sending a one-off donation or setting up a monthly donation you will help us with our national campaigns.