We are a rare disease alliance bringing together clinical and patient organisations in order to improve care for people living with rare autoimmune rheumatic diseases.
In June 2016, LUPUS UK; Scleroderma & Raynaud’s UK (SRUK); Vasculitis UK and the British Society for Rheumatology (BSR) came together to establish the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). RAIRDA is as an umbrella body for any charity with an interest in rare autoimmune rheumatic diseases. We started the alliance in 2016, but in 2018, the British Sjögren’s Syndrome Association (BSSA) became an member, and the Behçet’s Syndrome Society recently joined as an affiliate member.
We want to push a conversation on areas of commonality in rare diseases in our field (e.g. symptoms, treatments, diagnostic pathways, unmet needs and challenges) whilst at the same time, enable specific condition-related outputs. This alliance formally brings together for the first time, a dedicated body linking both clinical and patient organisations, and other key stakeholders, to improve care for people living with these conditions. We exist to provide a single and strong voice that will raise the profile of this group of conditions, influence policy and guide future research.