Patient information

We encourage patients to contact their GP or any of the patient support groups listed below.


As a society for medical professionals, we are unable to directly answer patient enquiries. 



Simple Tasks

Our  public awareness campaign tells policymakers, general practitioners, healthcare commissioners and the wider public about the value of rheumatology services



Patient support groups


The following organisations exist to provide support to people with musculoskeletal conditions and may be able to offer you extra support.

A  | B  | C  |  D  | E  | F  | G  | H  |  I  |  J  |  K  | L  | M  | N  |  O  | P  |  Q  | R  | S  | T  |  U  | V  |  X  |  Y  |  Z

A


Arthritis Care
Arthritis Care exists to support people with arthritis. We are the UK’s largest charity working with and for all people who have arthritis.We are a user led charity 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 Digest is a quarterly magazine that discusses the latest research relevant to people with arthritis. Find out more on the website, which is updated daily.

Arthritis Research UK
Arthritis Research UK is the charity leading the fight against arthritis. We’re working to take the pain away for sufferers of all forms of arthritis and helping people to remain active. We’ll do this by funding high class research, providing information and campaigning. Everything we do is underpinned by research.

The Arthritis Research UK Centre for Adolescent Rheumatology aims to improve the health and well-being of adolescents and young adults with arthritis and other rheumatic diseases through cutting-edge research. Their website was created by young people themselves and features over 50 videos of them talking about their experiences of living with rheumatic conditions and discussing different topics.

B


Back Care
Designed to help you to understand more about BackCare and the issues surrounding back pain. Also providing, 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.

British Scoliosis Society
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
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.

C


Choices - for Families of Children with Arthritis
Independent registered charity that aims to equip families of kids with arthritis with research-based information about how to live with arthritis and an education resource to enhance health and social care.

Children’s Chronic Arthritis Association
The Children’s Chronic Arthritis Association (CCAA) is the leading charity run by parents and professionals that offers emotional and practical support to maximize choices and opportunities and raise awareness of childhood arthritis in the community.

Contact a Family

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.

E


Ehlers-Danlos Support Group
Includes medical information, various support groups and events, the latest research on EDS, advice on how to cope with living with EDS,and an interactive message board to discuss personal issues on EDS.

F


FibroAction
Formed to raise awareness of Fibromyalgia Syndrome, aiming to make up-to-date and accurate information about the condition easily accessible for patients; friends, family and carers; and healthcare professionals.

Fibromyalgia Association UK
FMA UK was established in order to provide information and advice to sufferers and their families. The Association also provides medical information for professionals and operates a national helpline.

G


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.

H


Healthline is an online medical resource providing trustworthy and accurate health information and advice. Healthline's Rheumatoid Arthritis centre features an interactive guide as well as the latest RA news and advice. 

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.

L


Lupus UK
The only national registered charity supporting people with systemic lupus and discoid lupus and assisting those approaching diagnosis.

LDA is a national registered charity raising awareness and providing information on Lyme disease. We are accredited to the Department of Health’s Information Standard and thus provide well researched, unbiased information on a little understood disease. There is a patients’ help email address that patients may use for specific enquiries. 

M


Marfan Association UK
Support group which promotes education and research into the condition

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

N


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.

P


Paget's Association

A resource for those with Paget’s disease of bone, the public and health professionals, offering high quality information and support when necessary.

Palindromic Rheumatism Society
The International Palindromic Rheumatism Society is a privately owned voluntary group made up of people who know the most about PR, that is the people who have PR.

Perthes Association
Aims to help and advise families of children suffering from Perthes' disease and associated conditions.

Polymyalgia Rheumatica and Giant Cell Arteritis UK (PMRGCAuk) is a registered charity established to meet the needs of people with these debilitating conditions, their friends, families and helping professionals.

Psoriasis Association
Aims to support those with psoriasis; to raise awareness and to fund research into the causes of and treatments for psoriasis.

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

Psoriasis Scotland
PSALV is the only Scottish charity for all with both skin psoriasis, and PsArthritis. We run public info meetings with NHS speakers, provide information literature, campaign and hold events in the Holyrood parliament.

R


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

RSI Action
The national RSI (Repetitive Strain Injury) charity has the aims of preventing repetitive strain injuries in the UK and to facilitate the relief of sickness, hardship and distress amongst those suffering from RSI conditions.

Raynaud’s and Scleroderma Association
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.

S


Scleroderma Society
Aims 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.

Scottish Network for Arthritis in Children
The aim of SNAC is to provide a national support network for children with arthritis and their families in Scotland through the provision of factual, practical and emotional support.

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.

T


Therapy Directory
Aims to offer support to patients who often feel isolated, to increase awareness of the disease and to help people find a complementary therapist in their area.

V


Vasculitis UK
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.