The Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA) was formed in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases.
The Alliance is made up of four founding partner organisations, Lupus UK, Vasculitis UK, SRUK and BSSA. Having a powerful, single voice on key issues helps raise awareness and opens doors to decision makers in Government and elsewhere.
Vasculitis UK supports those suffering from vasculitis and their families by providing information and advice. It has been a registered UK charity since 1992 and is run entirely by unpaid volunteers, with no offices or overheads.
Vasculitis UK offers support to sufferers, their families and friends by providing information, advice and networking. It works with other organisations and medical professionals to improve recognition, diagnosis and treatment of vasculitis.
Vasculitis UK raises awareness of vasculitis among medical professions and the general population. It encourages and support the formation and development of local independent vasculitis support groups. It raises funds to support research, improvements in diagnosis and treatment.
Vasculitis is a collective term for a group of autoimmune diseases involving inflammation of the lining of the blood vessels. There are 18 varied types of vasculitis, defined by the size of vessel affected. Reliable statistics on prevalence for rarer types of vasculitis are not available. Research suggests that the prevalence of ANCA vasculitis is 26 per 100,000, with an annual incidence of 1200 new cases nationally.
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- General enquiries: 01629 650549
- Helpline: 0300 365 0075
LUPUS UK is the only national registered charity for people affected by lupus. It provides information, education and support for people living with lupus and their families and assists people approaching diagnosis.
The charity provides high-quality information, local peer-led support services throughout the UK and funds lupus research and Specialist Lupus Nurses in NHS Hospitals.
Lupus is a multi-symptom disease that can affect almost any part of the body. There are two main types: systemic lupus erythematosus and cutaneous lupus, which affects the skin.
Published estimates of the number of people in the UK with lupus are between 25-96 per 100,000, varying according to method of case ascertainment, gender and ethnicity, with more recent higher estimates possibly reflecting improved survival. The majority (80%) of people living with lupus are women, and the condition is more common amongst people of Black, Asian or Chinese ethnic origin. Lupus is not contagious.
- General enquiries: 01708 731251
Scleroderma & Raynaud’s UK (SRUK) is the only UK charity dedicated to improving the lives of people with Scleroderma and Raynaud’s phenomenon.
SRUK improves awareness and understanding of these conditions, supports those affected, and ultimately, hopes to find a cure. SRUK currently supports 22,000 people in Britain. Its aim is to reach out to every single person who has scleroderma or Raynaud’s, providing them with information and support.
By creating connections between people with the conditions and professionals, SRUK has built a motivated community that shares knowledge and support, works in partnership on research projects, and speaks up about scleroderma and Raynaud’s.
About Scleroderma and Raynaud’s
Scleroderma is a chronic and complex multi-organ disease. There are two main types of scleroderma: localised (affects mainly the skin) and systemic (internal organs are affected as well as the skin). With systemic sclerosis, the heart, oesophagus, blood vessels, kidneys, lungs, and digestive system can all be involved. Scleroderma affects approximately 20 in every 100,000 people.
Raynaud’s is a common condition that affects up to 10 million people in the UK. When we are exposed to the cold, a normal response of the body is for the blood vessels, such as those in the fingers and toes, to become narrower. When someone has Raynaud’s, the narrowing of the blood vessels is more extreme, resulting in the skin changing colour. The fingers and toes may change from white to blue, and then to red. A Raynaud’s attack can be very painful, especially as the circulation returns. Raynaud’s can also affect the lips, nose, ears and nipples in the same way. It occurs more commonly in women, and often presents before the age of 30.
- General enquiries: 020 3893 5998
- Helpline: 0800 311 2756
The British Sjögren’s Syndrome Association (BSSA) was founded in 1986 to raise awareness of the disease and support research into its cause and treatment.
A self-help organisation with more than 2300 members, the BSSA is dedicated to providing mutual support and information to individuals affected by this disabling disease. It has regional support groups throughout the UK, whose members include sufferers and supporters who work together in helping one another cope with the day-to-day challenges of this debilitating and distressing condition.
The BSSA also has a helpline and distributes literature including an informative quarterly newsletter, along with an annual research grant. There is currently no cure for Sjögren’s Syndrome and the cause is still unknown.
About Sjögren’s Syndrome
Sjögren’s Syndrome is the UK’s second most common autoimmune rheumatic disease, yet the condition remains under recognised and frequently under treated. It does not command a high profile within the medical profession, and the general public is largely unaware of the problems faced by sufferers.
In reality, Sjögren’s Syndrome can be a debilitating, distressing and miserable condition. It affects approximately 0.6% of adults in the UK¹, with a mean age of 50 years. 90% of patients are women.
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- General enquiries: 0121 478 0222
- Helpline: 0121 478 1133