RAIRDA is made up of the following members:
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.
- Email via site
- General enquiries: 01629 650549
- Helpline: 0300 365 0075
LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. It has more than 5500 members and a number of regional groups around the UK who arrange medical talks, publish local newsletters, set up local occasions and organise fundraising events.
LUPUS UK also produces an informative national magazine with lupus articles, letters, reports, and photographs, and operates a strong Grant Programme for research purposes and welfare.
Lupus is a multi-symptom disease that can affect almost any part of the body. There are two main types: systemic lupus erythematosus and discoid 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 and Raynaud’s UK
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.
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.
- General enquiries: 020 3893 5998
- Helpline: 0800 311 2756
The British Sjögren’s Syndrome Association
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.
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.
- Email via site
- General enquiries: 0121 478 0222
- Helpline: 0121 478 1133
Behçet’s UK (formerly Behçet’s Syndrome Society) represents all Behçet’s patients in the UK including those yet to be diagnosed. Behçet’s UK strives to secure the best care for all Behçet’s patients and assist their carer’s, parents and relatives. Reducing time to diagnosis by adopting consistent criteria is our top priority; as well as ensuring that members diagnosed with Behçet’s receive access to timely effective treatment together with best practice care and pathways.
Raising comprehensive awareness of Behçet’s amongst all clinicians within NHS primary, secondary and tertiary care is vital in achieving these outcomes, together with promoting research into the cause, effects, treatment and management of this rare, complex and debilitating lifelong disease.
Having helped to establish three Behçet’s Centres of Excellence in England, Behçet’s UK now lobbies for proper comprehensive care in Wales, Scotland and Northern Ireland.
What is Behçet’s?
Behçet’s Syndrome (now more commonly known as Behçet’s Disease) is a chronic condition resulting from disturbances in the body’s immune system.
This system, which normally protects the body against infections by producing controlled inflammation, becomes over-active and produces unpredictable outbreaks of unwanted and exaggerated inflammation. This extra inflammation affects blood vessels, usually the small ones. As a result symptoms occur wherever there is a patch of inflammation; this can be anywhere where there is a blood supply.
No-one knows why the immune system starts to behave this way in Behçet’s. It is not because of any known infections, it is not necessarily hereditary, but does occur sometimes, and it is not thought to have to do with ethnic origin, lifestyle, age, where someone has lived or where they have been on holiday. It is not associated with cancer, and links with tissue-types (which are under investigation) are not certain. It does not follow the usual pattern for autoimmune diseases. At the moment it is defined as being a disease of inflamed blood vessels (vasculitis) – a vasculitic disease.
- General enquiries: 0345 130 7328
- Helpline: 0345 130 7329