By Sue Farrington, co-chair, Rare Autoimmune Rheumatic Disease Alliance
This Rare Disease Day, as we consider the challenges faced by people with rare autoimmune rheumatic diseases (RAIRDs) across the UK, there are many positive examples of excellent care and treatment across the UK. However, we know that many people with RAIRDs across the UK are still facing challenges in accessing the care and treatment they need, but through the continued implementation of solutions such as specialised networks, we can continue to improve patient satisfaction and outcomes.
On this global day of awareness for people with rare diseases, I wanted to reflect on RAIRDA’s achievements in driving this work forward over the past year, and to outline our priorities for the future. As the UK’s first alliance uniting clinical and patient organisations to advocate for those with rare autoimmune rheumatic diseases (RAIRDs), we are proud of the progress we have made, and in 2025, we will continue to drive change for people living with these conditions.
Key highlights from the past year:
- Parliamentary engagement: Ahead of the 2024 general election, we launched our manifesto, advocating for action from the new Government. We engaged with members of parliament across the political spectrum, and built our base of parliamentary champions happy to advocate on behalf of people living with RAIRDs.
- Westminster Hall Debate: In December 2024, the first ever Westminster Hall debate on Rare Autoimmune Rheumatic Conditions was held, thanks to the support of Jim Shannon MP and 10 cross-party MPs. The debate spotlighted the urgent need for faster diagnosis, improved specialist care, and a quality standard for rare diseases, and has given rise to opportunities for further engagement with officials on these issues.
- Shaping policy: RAIRDA has submitted responses to key consultations, including the Government’s Personal Independence Payment (PIP) consultation, developed with input from our member charities, and the NHS 10-Year Plan consultation. We continue to monitor developments to ensure the voices of those with RAIRDs are heard.
- Work towards a quality standard for rare disease: RAIRDA has continued to push for the development of a quality standard for rare disease, to drive improvements in diagnosis, treatment and care across the rare disease space.
Looking ahead:
This year, we will publish findings from our 2024 patient survey, based on responses from 1,352 people living with RAIRDs.* Preliminary data from the survey found that the average time to diagnosis from symptom onset was 2.5 years. Given the impact that these delays can have on the long-term health of people living with these incurable conditions, failure to address this will have a significant impact on preventing ill health for people with RAIRDs, and insights from this survey will directly inform our advocacy and policy efforts to drive change for people living with RAIRDs.
Further, the release of the 2025 Rare Disease Action Plan, as well as the upcoming 10-year health plan, will provide further opportunities to engage with the government to drive meaningful change and reduce inequalities for those living with rare diseases.
Many thanks to our community, and to everyone who has supported RAIRDA’s work across the past year.
*An online survey was conducted by Ipsos between 22nd April and 31st May 2024 of individuals aged 16 and over living with rare autoimmune rheumatic disease(s) in the UK. A total of 1,352 questionnaires were completed. The sample was freefind. The data was not weighted. Full survey results will be published by RAIRDA in 2025 – please contact RAIRDA at rairdauk@gmail.com for more information about the survey if required.