The UK needs to do more to improve care for non-hereditary rare rheumatic diseases, according to a report.
The British Society for Rheumatology issued the call after releasing a report on the state of care for rare rheumatic and musculoskeletal conditions.
It covers the success or otherwise of the UK Strategy for Rare Diseases, launched two years ago.
The aims of the strategy are to "facilitate early diagnosis and access to treatment for people with rare diseases, improve the co-ordination of care and promote the UK as a world leader in research in this field".
Although progress has been made over the two years, British Society for Rheumatology says more needs to be done in relation to the 20% of rare conditions that are non-hereditary.
These include rare autoimmune diseases such as Antineutrophil Cytoplasmic Autoantibody Associated Vasculitis, Systemic Lupus Erythematosus, Myositis and Scleroderma.
Experts at the Society believe this important subgroup of rare diseases "have thus far been overlooked by the Strategy and most of the national implementation plans".
A spokesperson for the Society said: "These complex medical conditions can be difficult to identify and diagnose, with many people experiencing delays of up to five years between the onset of their symptoms and diagnosis. These delays are frustrating for the individuals, but also mean that opportunities for early intervention are missed, potentially increasing the risk of developing permanent disability and organ failure, which can be life threatening."
President-elect of the Society, Dr Peter Lanyon, commented: "We now have greater clarity on what has been achieved and what needs to be done for patients up and down the country. We will work with partners to improve the delivery of care for these rare conditions."
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