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The Rare Autoimmune Rheumatic Disease Alliance

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Our story

In June 2016, LUPUS UK, Scleroderma & Raynaud’s UK (SRUK), Vasculitis UK and the British Society for Rheumatology (BSR) came together to establish the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). RAIRDA is an umbrella body for organisations with an interest in rare autoimmune rheumatic diseases. In 2017, the British Sjögren’s Syndrome Association (BSSA) became an affiliate member, joining as a full member in 2018.

RAIRDA enables a united dialogue on areas of commonality (e.g. symptoms,
treatments, diagnostic pathways, unmet needs and challenges) whilst at the same time enabling specific condition-related outputs. For the first time, this alliance formally brings together a dedicated body linking both clinical and patient
organisations, as well as other key stakeholders, to improve care for people living with these conditions.

We exist to provide a single, strong voice that will raise the profile of this group of conditions, influence policy and guide future research.

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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-…

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