Patient Support & Advocacy Groups

Arthritis Care

Arthritis Care exists to support people with arthritis. We are the UK’s largest organisation working with and for all people who have arthritis. We are a user led organisation which means people with arthritis are at the heart of our work – they form our membership, are involved in all of our activities and direct what we do.

Arthritis & Musculoskeletal Alliance

ARMA - The Arthritis and Musculoskeletal Alliance - is the UK umbrella association bringing together support groups, professional bodies and research organisations in the field of arthritis and other musculoskeletal conditions.

BackCare

This website is designed to help you to understand more about BackCare and the issues surrounding back pain. The site also provides, facts, information on tips for a healthier back and specialist resources.

Behçet’s Syndrome Society

The official UK patient support group for people with Behçet’s disease.

Bone & Joint Decade

 

British Coalition of Heritable Disorders of Connective Tissue

The Telangiectasia Self Help Group was founded in 1985 to maintain a register of sufferers and to put affected families in touch with one another. The group was initially funded by a donation from the Thames/LWT Telethon Trust. A newsletter is sent to all members on an occasional basis informing them of the developments in the treatments of this disease.

British Paediatric Rheumatology Group

The main objects of the College are to advance the art and science of paediatrics, improve standards of medical care to children, and to educate and examine doctors in paediatrics. Additionally, the College has a function in providing information to the public on the health care of children.

British Scoliosis Society

The object of the British Scoliosis Society is to provide an open forum for Scoliosis surgeons, Scientists and Health Care Professionals to engage in debate about scoliosis aetiology, pathogenesis and treatment and the presentation and encouragement of scoliosis research.

British Sjogren's Syndrome Association

The British Sjögren's Syndrome Association is a registered charity that aims to educate people about Sjogren's Syndrome, raise awareness surrounding its existence and symptoms, and support research into its cause and treatment.

Choices - for Families of Children with Arthritis

An independent registered charity that aims to equip families of kids with arthritis with research based information about how to live with arthritis. We also provide an education resource to enhance health and social care, community and education services, and promote the inclusion of the service users' perspective on the delivery of flexible, collaborative and enabling services in the future.

Contact a Family

Contact a Family is a national registered charity, founded in 1979, for families with disabled children. We are the only UK charity providing support and advice to parents whatever the medical condition of their child.

Ehlers-Danlos Support Group

This website has many purposes; to share medical information about EDS, to make you aware of various support groups and events available, to give you the latest research on EDS, some advice on how to cope with living with EDS, show available publications, and to allow you to discuss your personal issues on EDS with other people in our interactive Message Board.

FibroAction

FibroAction was formed to raise awareness of Fibromyalgia Syndrome and aims to make up-to-date and accurate information about the condition easily accessible for patients; their friends, family and carers; members of the press & media; and healthcare professionals.

Fibromyalgia Association UK

FMA UK was established in order to provide information and advice to sufferers and their families. In addition, the Association provides medical information for professionals and operates a national helpline.

UK Gout Society

The UK Gout Society provides gout sufferers with further information about the causes and treatment of gout, and about organisations that are committed to education, health promotion and the prevention of gout. In addition, it aims to increase public awareness and knowledge about this painful, potentially disabling, but eminently treatable disorder.

Hypermobility Syndrome Association

The Hypermobility Syndrome Association aims to provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large.

Lupus UK

LUPUS UK is the only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis. We presently have over 7,500 Members and 30 Regional Groups 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.

Marfan Association UK

Support group which promotes education and research into the condition

Myositis Support Group

Charity which provides information and practical advice and research into Dermatomyositis (DM), Polymyositis (PM), Juvenile Dermatomyositis (JDMS), Juvenile Polymyositis (JPM) and Inclusion Body Myositis (IBM).

National Ankylosing Spondylitis Society

Patient support group for people with ankylosing spondylitis

National Association for the relief of Paget’s disease

Offers support and information for people with Paget’s disease and sponsors research into the disease

National Osteoporosis Society

Patient support group which raises awareness of the condition and sponsors research into osteoporosis

National Rheumatoid Arthritis Society

A patient led national Charity focussing entirely and specifically on Rheumatoid Arthritis

PARE: People with Arthritis/Rheumatism in Europe

A pan-European initiative focused on improving the quality of life for the 103+ million Europeans affected by arthritis/rheumatism.

Perthes Association

Association which aims to help and advise families of children suffering from Perthes' disease and associated conditions

Psoriasis Association

The Psoriasis Association aims to support those who have psoriasis; to raise awareness about psoriasis, and to fund research into the causes of and treatments for psoriasis.

Psoriatic Arthritis Alliance

Patient support group which provides information about the condition and campaigns for increased awareness and better treatment

RADAR

The UK’s campaigning and advisory disability body, run by and for people with disability

Raynaud’s and Scleroderma Association

A national charity committed to raising awareness of these potentially devastating diseases and raising money for essential research in order to determine cause, enhance treatment and find a cure

Scleroderma Society

The aims of the Society are to offer support to patients who often feel isolated, to increase awareness of the disease and to raise money for vital research

Scoliosis Society

Patient support group which aims to provide information about scoliosis, eliminate fear and stigma, and offer contacts for shared experiences

Sick Children’s Trust

Our aim is to help seriously ill children by providing support and accommodation for the entire family during a child’s hospital treatment

Society for Back Pain Research

Society which aims to promote the study of all clinical and scientific aspects of spinal pain, including the neck, and to encourage research into its causes, treatment and prevention

Vasculitis

The Stuart Strange Vasculitis Trust provides support and a Contact List for members (family and friends as well as patients), and a newsletter which is published at least twice a year. The website provides information on different types of vasculitis.