Rare Disease Day 2024

29 February 2024

Did you know that there are 3.5 million people in the UK living with a rare condition? And that 1 in 17 people will be affected by a rare condition at some point in their lives?

For Rare Disease Day 2024 we highlighted that although rare conditions are individually rare, they are collectively common. We shared the statistics that surround living with a rare condition and told the stories of the people behind them. People with genetic, rare and undiagnosed conditions are at the heart of everything we do and we want to ensure that their experiences are shared to illustrate the stories behind the statistics.

Take a look below at some of the exciting projects we got involved with and get in touch if you’d like to know more, or want to share your expereinces.

Rare Conditions: Stories behind the stats with ITN Business

Our programme in partnership with ITN Business, ‘Rare Conditions: The Stories Behind the Stats’ is now live. The programme, presented by Sangeeta Kandola, raises awareness of rare conditions, looks at how collaboration and coordination of care can help improve outcomes and the treatments helping patients manage their symptoms and provide an improved quality of life.

Throughout the programme we meet the patients and their families, the health professionals and the thought leaders to help raise awareness of the realities of living with a rare condition.

View our animation below of take a look at the full programme and sponsored films here.

Your stories

We asked you to share your #StoriesBehindTheStats

Take a look

Stats behind the stories

Statistics are simple and memorable. For Rare Disease Day 2024, our campaign has focused on raising awareness of statistics among the public and healthcare professionals, and sharing some of the stories behind the statistics.

However, for this year’s Rare Disease Day policy report we’re turning this approach on its head and exploring the ‘Stats behind the stories‘. As Rebecca Middleton, CEO and Founder of Hereditary Brain Aneurysm Support says:


‘It’s often said in the rare disease world that if you can’t be counted, then you don’t count. And of course, counting data is counting people. Each data point has a person and a powerful story behind it.’

Rebecca Middleton, Stats Behind the Stories

New factsheets

Alongside our report, we have produced 6 clear and simple factsheets on key areas of rare conditions. We encourage you to take a look, share and use these factsheets in your own work. If you’d like these sheets in a printable format then please get in touch.

Browse our factsheets below. Or find them all on our ‘Facts and figures‘ web page:

Guardian feature

We supported the Rare Diseases Campaign that launched within the Guardian and online.

In it our Director of Policy, Nick Meade wrote about ‘exploring how to manage rare conditions in the UK effectively‘.

The Rare Diseases Campaign looked at aiming to raise awareness around rare conditions and genetic conditions, ensuring that the impact of living with a rare conditions is fully recognised and featured insightful content other leaders in the field such as; Rare Diseases International, EURORDIS, Beacon, Wolfram Syndrome UK and more.


Schools toolkit

We are delighted to announce the release of our new school toolkit, designed for children between the ages of 8-12, and created in collaboration with EURORDIS. We want to support the education of the future generation and support a brighter future for those living with rare conditions.

We’d like to thank our member organisations who helped review our work and also Hannah Frankish for all her invaluable support and insights on this project.

Rare Disease Day event success

Thank you to everyone who came along to our Rare Disease Day events in Wales, Scotland, London and our online join nation event. We have loved listening to the conversations that took place, hearing your feedback and seeing your photos.

You can take a look at the photos from these events on our Flickr account.

Share our social media assets

You can still view and download our visual assets to share on your social media all year around. It’s as easy as 1-2-3!

  1. Click the buttons below to download our square and / or landscape images and post them straight to your social media
  2. Tag Genetic Alliance UK or Rare Disease UK in your posts
  3. Use the tag #StoriesBehindTheStats

There are so many ways to support us

If you are unable to fundraise, you can still support our work in other ways.

Take a look now

Need support?

If you have an idea, question or want to learn more then don't hesitate to get in touch.

Contact us now

And a big thank you to our Rare Disease Day 2024 sponsors and supporters