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The Rare Autoimmune Rheumatic Disease Alliance

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RAIRDA is an alliance bringing together patient organisations to campaign for improved care for people living with rare autoimmune rheumatic diseases in the UK

Supporter Action Call

We’re calling on you to help us #ResetTheBalanceForRAIRDs.

You can do this by writing to Parliamentarians to help raise the profile of our work, including calling for a quality standard for rare disease.

Find out more

Our priorities:

  • Protection against the ongoing threat of COVID-19 and other viruses
  • Quicker and more effective processes for diagnosis
  • Better access to treatments – including new and innovative drugs across the UK
  • Better co-ordination of care
  • Improving access to specialist care and knowledge within the workforce
  • Reducing inequalities in access to high quality care and treatment 

Over 160,000 people with rare autoimmune rheumatic diseases like vasculitis, lupus, scleroderma and Sjögren’s syndrome live in the UK.

Source

(Peach, E., Rutter, M., Lanyon, P., Grainge, M., Hubbard, R., Aston, J., Bythell, M., Stevens, S. and Pearce, F., 2020. Risk of death among people with rare autoimmune diseases compared with the general population in England during the 2020 COVID-19 pandemic. Rheumatology, 60(4), pp.1902-1909.)

Around 1 in 1,000 people have some form of lupus in the UK.

Source

Lupus UK website

Featured RAIRD story

Dalila: “With lupus, you don’t know when your next flare will be.” 

Read more

Latest

26 Feb 2023

Rare Disease Day: Update From Sue Farrington

26 Feb 2023

Briefing: A Quality Standard for Rare Disease

9 Nov 2022

Vaccines Misconceptions Q and A

4 Nov 2022

Resetting the Balance Report

Read more news

Our Members

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RAIRDA is calling on you to raise the profile of rare autoimmune rheumatic diseases in Parliament. Send our template letter to your local representative today and help #ResetTheBalanceForRAIRDs. rairda.org/get-involved/2…

It's great to see that the 2023 Rare Diseases Action Plan references the recommendations made in RAIRDA's #ResettingTheBalance report, and that it highlights the work being done on a quality standard for rare disease by the IAG to the UK Rare Diseases Forum. twitter.com/DHSCgovuk/stat…

Our co-chair @lanyon_peter attended the #RareDiseaseDay parliamentary reception yesterday. It was a great opportunity to meet with others from the rare disease community, and to hear from @GeneticAll_UK, @LizTwistMP and @Helen_Whately. @MBythell pic.twitter.com/gPRAFGNL51

Take action this #RareDiseaseDay by contacting your parliamentary representative to ask them to advocate for people with RAIRDs. Together, we can #ResetTheBalanceForRAIRDs. rairda.org/get-involved/r…

This #RareDiseaseDay, read about RAIRDA's plan for #ResettingTheBalanceForRAIRDs, and how you can get involved rairda.org/rare-disease-d…

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