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:
These organisations together provide a unified voice on areas of commonality (symptoms, treatments, pathways, challenges) whilst at the same time enabling condition-specific input.
The Alliance has three key aims:
1. To raise the profile of the needs of people living with rare autoimmune diseases and their access to timely effective treatment
2. To promote the implementation of best practice care and pathways
3. To increase knowledge about patient care through better data
Further details can be found in the RAIRDA strategy.
The Alliance recently undertook a national survey and plans to publish a report in the coming months on key data on patient experience, including diagnostic delay and access to treatments.
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.