Rare Disease Day 2025

More than you can imagine: Opportunities for improving the lives of people living with rare conditions

Rare Disease Day 2025 is an important milestone for the government strategy on rare conditions, the UK Rare Diseases Framework. 2025 is the fifth and  final year of the existing Framework.

Genetic Alliance UK’s Rare Disease Day policy report ‘More than you can imagine: opportunities for improving the lives of people with rare conditions’ reflects on the impact of the UK Rare Disease Framework and highlights the significant unmet need that continues to exist in the rare condition community. 

The report recognises that the existing Framework has laid strong foundations and since its publication, new opportunities have emerged.

There is strong support for renewing the Framework among the rare conditions community. The report calls on the governments of the UK to renew their commitment to rare conditions and ensure that the successor to the existing UK Framework is supported by:

• Ring-fenced funding for each nation 
• Well-resourced delivery teams for effective implementation
• Ongoing involvement of the rare conditions community
• Enhanced collaboration across the four nations, including joint initiatives
• Development of clear metrics to monitor progress and evaluate outcomes
• Regular reporting of progress to facilitate comparison and collaboration

‘More than you can imagine: an anthology of rare experiences’

To mark Rare Disease Day 2025, we are proud to present More than you can imagine: an anthology of rare experiences. The anthology is a powerful collection of creative works that bring to life the experiences of individuals within the genetic, rare, and undiagnosed communities through poetry, personal stories, photography, and artwork.

View now

Support our work 

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 support of our work, and we’re here to help. There are plenty of running, cycling and adrenaline filled events taking place across the UK over the month. Take a look and register for something that interests you.

Looking for something less active? 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].

The shared experience of rare conditions

The shared experience of rare conditions has been captured by Rose Matheson (illustrator and paramedic, Scotland). Rose attended Genetic Alliance UK’s Member Meeting in January 2025 where members of the rare community shared the most common challenges of living with a rare condition and discussed what would help improve their experience of care.

This illustration reflects the key points of that discussion and provides a visual representation of the shared experience of rare conditions. The second part of the illustration shows how healthcare professionals view rare conditions.

Feel free to view, download, share and print this incredible piece of work to help spread the word.

Rare Disease Day 2025 Receptions

If you missed out on any of our in-person events, our final in-person event will take place at the Scottish Parliament on Tuesday 18 March 2025 between 18:00-20:00.

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. It’s never too late to post and raise awareness, but don’t forget to tag us in your posts.