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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 living with rare autoimmune rheumatic diseases (RAIRDs).

The Resetting the Balance report provides compelling evidence that late diagnosis and inadequate care of these diseases can significantly reduce a person’s life expectancy and have a major impact on their quality of life.


Sue Farrington, Co-Chair of RAIRDA, said: “People living with rare conditions have too often been forgotten when it comes to policy or investment in health services. The Resetting the Balance report presents evidence and clear recommendations for how to improve care and services for people living with RAIRDs across the UK.

“We hope that the next few years will see policy developments that reflect the needs of people living with these serious illnesses, and real breakthroughs in important areas such as improving diagnosis and creating and accessing new treatments. We also hope that the experience of living with a RAIRD is dramatically improved as care and treatment reaches parity with other
more common conditions.

“Finally, we hope this progress happens across the UK, with the treatment a person gets no longer being determined by which nation or region they live in.”

In order to urgently address the care and treatment of people living with these rare conditions, RAIRDA is calling for quicker and more effective processes for diagnosis for people with RAIRDs, better access to treatments – including new and innovative drugs, an elimination in care and treatment inequalities and, due to the vulnerability of RAIRD patients, priority access to vaccines and treatments for Covid-19 and other viruses.

The report has received coverage in The Daily Mirror, Daily Express and Daily Record, as well as Personnel Today.

Read the report

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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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