Rare Disease UK Team


You can make a one-off donation or a regular monthly contribution to help Rare Disease UK to improve access to treatment, care and support for the 3.5 million people in the UK who will be affected by a rare disease at some point in their lives.


Campaign with us

Rare Disease UK will be hosting receptions in the Welsh Assembly, Houses of Parliament and Scottish Parliament to mark Rare Disease Day. We want decision-makers and government to understand the impact rare diseases have on the lives of individuals and their families and to make rare diseases a health priority. You can help by writing to your Assembly Member, Member of Parliament, or Member of Scottish Parliament to invite them to attend the receptions.

Sharing your experience with your local representative is a powerful way to make change and influence decisions about rare diseases. A letter template to help you write to your local representative is available here.

Stay in touch

Sign up to our newsletter to receive the latest rare disease news and find out the ways in which you can get involved with our campaigning activities. You can also share your experience with us, by writing a blog or becoming a media spokesperson, just email info@raredisease.org.uk and tell us how you want to raise awareness.

Fundraise for us

We rely on our fabulous fundraisers to help us continue our work. Take on a challenge event, throw a star party and get your friends to dress as their favourite celebrity, or do a star bake sale at work, there are so many ways to raise money for Rare Disease UK. We’ll send you everything you need to make your event or idea a success, and you’ll get our support to make sure it is fun!

Email: fundraising@raredisease.org.uk
Call: 0207 831 0883

Wear Rare Disease UK with pride

With t-shirts, wristbands and more. Visit our shop to get your Rare Disease UK merchandise.

Spread the word

The easiest way to illuminate the rare reality is to add your own star and share on your social media. Not big on social media? Just having conversations with your friends and family is a great way to spread the word, you never know where sharing your story may end up.

Add your star