RAIRDA is a forum established to bring together clinical and patient organisations and other key stakeholders in order to improve care for people living with rare autoimmune rheumatic diseases. The group was formed as a result of a report which brought together stakeholders with an interest in rare or complex rheumatic and musculoskeletal diseases to raise the priorities of these conditions and patient care.
RAIRDA aims to provide a single, strong voice that will raise the profile of this group of conditions, influence policy and guide future research. RAIRDA currently operates as an umbrella body for four organisations (Lupus UK; Scleroderma & Raynaud's UK (SRUK); Vasculitis UK and the British Society for Rheumatology (BSR)) providing a unified voice on areas of commonality (symptoms, treatments, pathways, challenges) whilst at the same time enabling condition-specific input.
Background on rare diseases in the UK
Despite a UK Strategy for Rare Diseases, published by the Department of Health in November 2013, rare diseases have significant diagnostic delay, which is likely to affect outcomes and cause high treatment costs.
1 in 17 people, or 7% of the population, will be affected by a rare disease at some point in their lives. This equates to approximately 3.5 million people in the UK. 80% of rare diseases are of genetic origin, with 20% of people living with rare non-genetic diseases. An important component of this subgroup is the rare autoimmune rheumatic diseases.
The rare autoimmune rheumatic diseases are a complex group of conditions that predominantly have onset in later life, although some can present during childhood. They can be difficult to identify and diagnose, with many people experiencing delays of up to five years or more between the onset of their symptoms and diagnosis. This delay has a significant impact, leading to poorer outcomes such as permanent disability and organ failure, along with higher treatment costs. Examples of this impact include:
- - Giant Cell Arteritis, where 2000 people a year lose their sight
- - ANCA-associated vasculitis, where 15-20% of people die within one year of diagnosis, a survival rate worse than breast and prostate cancer
- - Lupus, where people die on average 20 years earlier than the mean for people in the UK
- - More than half of patients diagnosed with diffuse systemic sclerosis will die or develop significant heart, lung or kidney problems within three years.
RAIRDA is in the process of developing a patient survey for people who have Vasculitis, Lupus and Scleroderma and Raynaud's. This will lead to the development of a policy report capturing key data on patient journeys (diagnosis delay, access to treatment etc).
RAIRDA published an election manifesto in May 2017 and lobbied the health teams of each political party.
RAIRDA provided a briefing to Members of Parliament regarding a debate on the implementation of the UK Strategy for Rare Diseases, which was held on 28 March 2017 in Westminster Hall, House of Commons. A number of MPs, representing patients from across the UK, took part in the debate, tabled by Ben Howlett MP who chairs the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions.
Between October 2016 and January 2017, the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions conducted an inquiry into the implementation of the UK Strategy for Rare Diseases in England. RAIRDA submitted evidence into the inquiry and the subsequent report can be found here.