The case for a rare disease patient experience survey
Data is hard to come by for rare diseases – the very nature of the diseases make it more challenging to pull information together. This...
RAIRDA’s submission to the Timms Review Call for Evidence
A summary of the review into PIP, and RAIRDA’s draft response Earlier this year, the government launched the Timms Review, aiming to ensure that Personal...
NICE Quality Standard for Rare Disease published
RAIRDA welcomes the publication of the NICE Quality Standard for Rare Disease. This quality standard marks the first developed collaboratively between NICE and the patient...
RAIRDA: our calls for the next Welsh Government
The case for change Rare autoimmune rheumatic diseases (RAIRDs) include serious and often life-limiting conditions such as lupus, scleroderma, Sjögren’s disease and vasculitis, where the...
RAIRDA’s statement on the 10-Year Health Plan for England
We welcome the Government’s focus on diagnosis in the new 10-Year Health Plan. Our Rare Care Matters report, produced in collaboration with Ipsos, shows that while...
Rare Care Matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients
Almost one-third of UK patients face a five-year wait for diagnosis. Today, the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a new report, revealing...
COVID-19 Seasonal Vaccination Programme: Autumn/winter 2024/25 – What people with RAIRDs need to know
The information on this webpage has been based on this summary from our member organisation Lupus UK. The NHS COVID-19 Seasonal Vaccination Programme: Autumn/winter 2024/25...
Email your local MP to speak up for people with rare autoimmune rheumatic conditions
In the light of the new Parliament, RAIRDA will continue to arrange meetings with, and promote our asks to, Members of Parliament and policymakers. RAIRDA’s...
RAIRDA Survey 2024 Participant Information Sheet
RAIRDA’s 2024 Manifesto
This Rare Disease Day, RAIRDA is excited to launch our 2024 manifesto, which highlights our key calls for the next UK Government. Our key calls...
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...
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