The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) brings together patient organisations and clinicians working in the field as a strong voice to campaign for improved care for people living with rare autoimmune rheumatic diseases, raise the profile of this group of conditions, influence policy and guide future research.
Rare autoimmune rheumatic diseases (RAIRDs) can be split in two groups: connective tissue disorders (Lupus, scleroderma, myositis, primary Sjögren’s syndrome) and systemic vasculitis (ANCA-associated vasculitis, giant cell arteritis, Takaysu’s Arteritis and Behcet’s disease). These conditions are characterised by the body’s own immune system becoming overactive and attacking healthy tissues, often in multiple organs throughout the body simultaneously, leading to tissue or organ damage which can be fatal.
These conditions can affect many parts of the body (including joints, skin, lungs, kidneys and heart) and often require cross-specialty medical expertise. Unlike the vast majority of rare diseases, these conditions predominantly occur in adult life and do not have a simple genetic link. They also disproportionately affect women, for example women make up 80% of lupus patients. The impacts of these conditions on a patient can vary depending on the organ(s) affected but they can be severely life limiting and life threatening. Around 9,000 people will be diagnosed with vasculitis (including Behcet’s), scleroderma, lupus or primary Sjögren’s Syndrome every year.
For more information about specific RAIRDs, visit the websites of our member charities.