The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) was formed in 2016 in order to improve the quality of life of people living with rare autoimmune rheumatic diseases. The founding partners of the Alliance were:
RAIRDA was established to bring together clinical and patient organisations and other key stakeholders to improve care for people living with these conditions. RAIRDA aims to provide a single, strong voice that will raise the profile of rare autoimmune rheumatic diseases, influence policy and guide future research. RAIRDA operates as an umbrella body for organisations with an interest in rare autoimmune rheumatic diseases, providing a unified voice on areas of commonality, such as symptoms, treatments, pathways and challenges, whilst at the same time enabling condition-specific input.
Rare diseases in the UK
In November 2013, the Government launched the UK Strategy for Rare Diseases
, in order to improve care and treatment of people living with rare diseases and promote research. The progress to date on the Strategy has been very much in relation to the 80% of rare diseases of genetic origin. RAIRDA believes, however, that the needs of the remaining 20% of people living with rare non-genetic diseases have been largely overlooked and rare autoimmune rheumatic diseases make up an important subgroup of these non-hereditary conditions. People living with these conditions are still experiencing significant diagnostic delays, a lack of co-ordinated care and problems accessing treatment, all of which are contributing to poorer outcomes and increased healthcare costs.
The lack of focus given to these diseases was one of the main drivers for BSR, hosting a national workshop in November 2015, to raise the priority of rare rheumatic and musculoskeletal conditions and improve patient care. The workshop and subsequent workshop report, A collaborative approach to improving outcomes in rare rheumatic and musculoskeletal diseases
were catalysts for the formation of RAIRDA. Recommendations from the report include: enhancing rare condition knowledge across all health professionals and the wider public, improving early diagnosis, promoting equality of access to treatment, developing national audits for rare conditions and improving the data available to the NHS through disease registries and specific coding.
RAIRDA’s goal and aims
RAIRDA’s ultimate goal is to improve the quality of life of people living with rare autoimmune rheumatic diseases. The aims of RAIRDA are as follows:
- To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
- To promote the implementation of best practice care and pathways
- To increase knowledge about patient care through better data
- To support the implementation of the UK rare disease strategy
Westminster Hall Debate
We need your help
Next week, MPs will meet in Parliament to debate the implementation of the UK Strategy for Rare Diseases in England. This is a huge opportunity for us to raise awareness of the problems facing patients and families affected by rare autoimmune rheumatic conditions in accessing a timely diagnosis, coordinated care and appropriate treatment.
RAIRDA is pleased that Ben Howlett MP, Chair of the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, has secured this Westminster Hall Debate, which will take place on Tuesday 28 March from 4.30-5.30pm. This opportunity, however, will not come around again.
To make sure enough MPs attend who support the needs of patients and families living with a rare disease, we are asking all our supporters to please e-mail your MP ahead of the event.
How to write to your MP
Please e-mail your MP ahead of the event. We have written a template e-mail which you can personalise and send to your MP. This can be downloaded here
If you're not sure who your MP is, and you want to find their e-mail address, click here