• Skip to primary navigation
  • Skip to main content
  • Skip to footer

RAIRDA HomepageRAIRDA

The Rare Autoimmune Rheumatic Disease Alliance

  • About us
    • Our members
    • About RAIRDs
    • Our board
    • Our story
  • What we do
    • Our priorities
    • A quality standard for rare disease
    • Publications
  • News
  • Get involved
    • Personal stories
    • Share your story
    • Campaign for us
  • Contact us
  • Search

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

Resetting the Balance

RAIRDA have released their latest report which provides evidence and clear recommendations on how to improve care and services for people living with RAIRDs across the UK.

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

9 Nov 2022

Vaccines Misconceptions Q and A

4 Nov 2022

Resetting the Balance Report

13 Sep 2022

Developing a Quality Standard for Rare Disease

1 Aug 2022

Charities and clincians urge Government to secure Evusheld

Read more news

Our Members

Footer

  • Twitter

The @APPG_VGP is calling for evidence and responses from patients, hospitals, patient groups, charities, clinicians, academics and private companies, to look at the experience of the #Forgotten500k immunocompromised patients during the pandemic. appg-vulnerablegroups.org/new…

GIRFT has worked with RAIRDA to develop the pathways for Giant Cell Arteritis (GCA) and Connective Tissue Disease. All 4 pathways support clinicians to provide the best patient care, and allow patients and commissioners to see what they can expect from a service. twitter.com/NHSGIRFT/statu…

It's great to see RAIRDA's policy paper and the stories of people with RAIRDs receive coverage in Personnel Today, the Daily Express, the Daily Record and the Daily Mirror today. personneltoday.com/hr/call-to…

RAIRDA have produced a Q&A document to address misconceptions and common questions about COVID vaccinations for people with RAIRDs. rairda.org/vaccines-misco…

Despite visiting her GP on several occasions, it took Georgina over 18 months to reach a diagnosis. We urgently need a quicker and more effective diagnostic journey for people with RAIRDs.#RAIRDA #ResettingtheBalance rairda.org/resetting-the-…

Contact us