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The Rare Autoimmune Rheumatic Disease Alliance

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Rare Disease Day: Update From Sue Farrington

As Rare Disease Day approaches on the 28th of February, it’s a great opportunity to reflect on our journey towards #ResettingtheBalance for RAIRDs, and the...

Briefing: A Quality Standard for Rare Disease

The Independent Advisory Group (IAG) to the forum on the UK Rare Diseases Framework is chaired by RAIRDA co-chair, Sue Farrington. The IAG has produced...

Vaccines Misconceptions Q and A

RAIRDA have produced a question and answer document to address misconceptions and common questions about COVID vaccinations for people with RAIRDs.  The document is designed...

Resetting the Balance Report

The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has released a report today highlighting ‘alarming disparities in the quality of care and treatment’ received by people...

Developing a Quality Standard for Rare Disease

RAIRDA is part of a working group exploring the development of a Quality Standard for Rare Disease, which will aim to improve the equity of...

Charities and clincians urge Government to secure Evusheld

Over 120 clinicians representing 17 different clinical specialities, across all 4 nations, have released a clinical consensus statement saying that there is sufficient evidence that...

Survey shows poor communication around COVID-19 vaccine and treatments for people with rheumatic conditions

We would like to thank everybody who took part in our survey of people with rheumatic conditions about the fourth coronavirus (COVID-19) vaccination dose. The...

RAIRDA launches fourth vaccination dose survey

RAIRDA and its member charities have launched a short survey aimed at all adults with a rheumatic condition in the UK. We want to understand whether...

Safe At Work: letter to employers, March 2022

We have published a safe at work letter for people with rheumatic diseases who are located in England and are at higher risk from Covid-19...

Take action against ending free COVID-19 testing kits

Join us in calling on the UK Government to continue free tests for people who are eligible for COVID-19 treatments, their families and close contacts....

MELODY Study: An Overview

The MELODY (Mass evaluation of lateral flow immunoassays for the detection of SARS-CoV-2 antibody responses in immunosuppressed people) study will use home antibody testing to understand how well immunocompromised...

Online survey – Steroid PRO study

Are you being treated with steroids for your rheumatic condition? We need your help to test a new questionnaire about steroid impact on quality of...

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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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