Contacts. Arthritis Care. Contacts. Arthritis Research UK. BackCare. Contacts

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1 Arthritis Care Arthritis Care exists to support people with all forms of arthritis. There are around 10 million people with arthritis in the UK. That s 10 million individuals, plus their families, each affected in a unique way. Arthritis Care provides high quality information and support to empower people to take control of their arthritis. They represent people with arthritis and involve them in developing and delivering their services. Arthritis Research UK Visit Arthritis Care Website Info@arthritiscare.org.uk Tel:+44 (0) Arthritis Care 18 Stephenson Way London NW1 2HD Arthritis Research UK is the leading authority on arthritis in the UK, conducting scientific and medical research into all types of arthritis and musculoskeletal conditions. It is the UK s fourth largest medical research charity and the only charity solely committed to funding high quality research into the cause, treatment and cure of arthritis, which affects more than seven million people in the UK today and millions more worldwide. BackCare Visit Arthritis Research UK Website enquiries@arthritisresearchuk.org Tel:+44 (0) Fax:+44 (0) Arthritis Research UK Copeman House St Mary's Gate Chesterfield Derbyshire S41 7TD BackCare is a national charity that aims to reduce the impact of back pain on society by providing information, support, promoting good practice and funding research. BackCare acts as a hub between patients, (healthcare) professionals, employers, policy makers, researchers and all others with an interest in back pain. Visit BackCare Website info@backcare.org.uk Tel: Fax: BackCare the Charity for Healthier Backs 16 Elmtree Road Teddington TW11 8ST

2 Birmingham Arthritis Resource Centre The Birmingham Arthritis Resource Centre (BARC) vision is to enable people with arthritis to have an improved quality of life and greater longterm independence through education about their diseases. This information will be provided in a variety of forms and aimed at the multi-cultural society that makes up Birmingham, particularly those who infrequently obtain conventional medical help, through partnership with local communities and the research environment of the University. British Association Occupational Therapists The British Association of Occupational Therapists is the professional body for all occupational therapy staff in the United Kingdom. The College of Occupational Therapists is a wholly owned subsidiary of BAOT and operates as a registered charity. The College sets the professional and educational standards for the occupational therapy profession and represents the profession at the national and international levels. The COT Specialist Section Rheumatology provides a forum for occupational therapists and occupational therapy staff that have an interest in rheumatology and musculoskeletal conditions. We work closely with other related organisations and professionals with a similar interest. We share and exchange knowledge, skills and ideas and provide access to resource material to promote research and evidence-based practice. Our networks create links between occupational therapists and students who have an interest in the area of rheumatology. The British Chiropractic Association The British Chiropractic Association (BCA) is the largest and longest-standing association for chiropractors in the UK. It was founded in 1925 Visit BARC Website c.gordhan@bham.ac.uk Tel: Birmingham Arthritis Resource Centre 1st Floor Lower Mezzanine Birmingham Central Library Chamberlain Square Birmingham B3 3HQ Visit British Association Occupational Therapists Website Reception@cot.co.uk Tel:+44(0) British Association of Occupational Therapists College of Occupational Therapists Borough High Street London SE1 1LB Visit The British Chiropractic Association Website

3 and has a membership comprising over 50% of the UK s registered chiropractors. The BCA only accepts members who have graduated from a nationally or internationallyrecognised college of chiropractic education, after a minimum of four years full-time training and ensures its chiropractors maintain high standards of conduct, practice, education and training. The BCA was a founder member of the European Chiropractors Union and the World Federation of Chiropractic. All BCA members are covered by a high quality professional indemnity insurance and the Association operates a robust professional standards and complaints management process. The British Institute of Musculoskeletal Medicine The British Institute of Musculoskeletal Medicine (BIMM). An organisation to promote the study of Musculoskeletal Disorders. The long-term aims of the Institute are to promote education and research in the science and art of musculoskeletal medicine for the ultimate benefit of the public. Disseminate knowledge about musculoskeletal medicine among the medical profession and stimulate and encourage clinical research. Co-ordinate efforts to increase the teaching of this speciality within the established educational structure. Promote the speciality within the NHS and to develop Musculoskeletal Medicine as a specialty. B.I.M.M. is interested in all forms of musculoskeletal medicine; sports medicine, osteopathic treatment, other types of manipulation, injection techniques and the use of physiotherapy and allied techniques. A large part of the work load for most members is back pain, but all forms of muscle and joint injury and pain are dealt with regularly. The techniques taught by the Institute are of use to all doctors especially in General Practice, Orthopaedics, Rheumatology and Pain Clinics. Membership of the Institute is restricted to registered medical practitioners. B.I.M.M. cooperates closely with the Society of Orthopaedic Medicine (SOM) which, in addition to medical members, has a strong physiotherapist membership. We jointly run a Winter Symposium in London, and publish, in association with the American Association of Orthopaedic Medicine and the Dutch Federation of Manual Medicine, the Journal of Orthopaedic medicine. enquiries@chiropracticuk.co.uk Tel: The British Chiropractic Association 59 Castle Street Reading Berkshire RG1 7SN Visit BIMM Website deena@bimm.org.uk Tel: Fax: The British Institute of Musculoskeletal Medicine PO Box 1116 Bushey Herts WD23 9BY

4 British Orthopaedic Association The British Orthopaedic Association (BOA)is the professional association for trauma and orthopaedic surgeons in the United Kingdom and those abroad who have had orthopaedic training in the UK or who show a continuing interest in the affairs of the Association. The Association s mission is to advance, for the public benefit, the science, art and practice of orthopaedic surgery with the aim of bringing relief to patients of all ages suffering from the effects of injury or disorders of the musculoskeletal system. British Sjogren Syndrome Association The British Sjögren s Syndrome Association (BSSA) was founded in 1986, as a registered charity, to raise awareness of the disease and support research into its cause and treatment. A self-help organisation with more than 2000 members, the BSSA is dedicated to providing mutual support and information to individuals affected by this disabling disease. We have 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, we distribute a variety of literature including an informative quarterly newsletter and we award an annual research grant. There is currently no cure for Sjögren s Syndrome and the cause is still unknown. Tel (Helpline): British Society for Paediatric and Adolescent Rheumatology British Society for Paediatric and Adolescent Rheumatology (BSPAR). BSPAR is a specialist society linked to the RCPCH (Royal College of Paediatrics and Child Health), with membership open to all health care professionals involved in the care of children and adolescents by Paediatric Rheumatology departments in UK and Ireland. BSPAR aims to advance paediatric rheumatology care in the Visit British Orthopaedic Association Website corporateaffairs@boa.ac.uk Tel: Fax: British Orthopaedic Association Lincoln's Inn Fields London WC2A 3PE Visit British Sjogren Syndrome Association Website office@bssa.uk.net Tel: British Sjogren Syndrome Association PO Box Birmingham B31 3DP Visit British Society for Paediatric and Adolescent Rheumatology Website enquiries@bspar.org.uk BSPAR 105, St Peter s Street St Albans

5 UK and Ireland by: Raising the standards of clinical care Enhancing the quality of training and promoting research British Society Rehabilitation Medicine The British Society of Rehabilitation Medicine (BSRM) is a learned society representing doctors who practise in Rehabilitation Medicine. It was formed in 1984 in the name of the Medical Disability Society and is a registered charity (Reg. No ). The Society encourages doctors in all clinical specialties to be involved in education and research into the management of disability. Membership of the BSRM is open to all registered medical practitioners interested and concerned with its objectives. British Society for Rheumatology The British society for Rheumatology (BSR) promotes excellence in the treatment of people with arthritis and musculoskeletal conditions and supports those delivering it. We have a 25 year history of promoting high quality standards of care, and providing education, training and support to those working in rheumatology. We have more than 1,500 members including rheumatologists, scientists, trainees, allied health professionals and others from the UK and overseas Chartered Society of Physiotherap y The Chartered Society of Physiotherapy (CSP) is the professional, educational and trade union body for the UK s 50,000 chartered physiotherapists, Herts AL1 3EJ Visit British Society Rehabilitation Medicine Website admin@bsrm.co.uk Tel:+44 (0) Fax:+44 (0) BSRM, c/o Royal College of Physicians 11 St Andrews Place London NW1 4LE Visit British Society for Rheumatology Website bsr@arma.uk.net Tel:+44 (0) Fax:+44 (0) British Society for Rheumatology Bride House Bride Lane London EC4Y 8EE Visit Chartered Society of Physiotherapy Website enquiries@csp.org.uk Tel:+44 (0) Bedford Row London WC1R 4ED

6 physiotherapy students and support workers. The CSP leads, promotes and represents the physiotherapy profession by driving excellence in physiotherapy practice and employment, and influencing healthcare policy across the UK. It is the voice of physiotherapy in the UK, supporting its members in transforming peoples health and well being. The CSP is a progressive, dynamic, membercentred organisation which aims to: lead and support all members in developing and promoting high quality innovative patient care protect and further advance the interests and working lives of its members raise the profile of the physiotherapy profession and influence the health care agenda work openly in partnership to meet the diverse needs of both its members and their patients.

7 ERAN Early Rheumatoid Arthritis Network (ERAN) is a network of British Rheumatology Departments who collect & monitor clinical details on all early RA patients in a standard way in order to assess outcome in the long term on a national basis. Objectives are - Visit ERAN website below n/ marie.hunt@whht.nhs.uk To record a minimum core data set of all new (and potential) RA cases. To collect data compatible with the BSR anti-tnfa register. To allow the facility for additional and optional data collection. Ehlers-Danlos Support UK EDS UK was founded in 1987 to support and educate all those living with Ehlers-Danlos Syndrome. The organisation produces literature, DVDs and merchandise to increase the understanding in managing this condition. The organisation supplies education and resources for the medical community and funds research. Raising awareness in this area is important, as Ehlers Danlos Syndrome is often misunderstood and misdiagnosed. Visit Ehlers-Danlos Support UK Website EDS@dev.arma.uk.net Ehlers-Danlos Support UK provides a membership package that includes a biannual newsletter and a support network in your local area. They also offer members

8 exclusive access to an area on their website containing past conference videos, a friendly specialists' directory and previous issues of the Fragile Links newsletter. EDS UK host conferences and events to keep the community informed with the latest developments. Fibromyalgia Association UK Fibromyalgia Association UK is a registered charity administered by unpaid volunteers. FMA UK represents the possible 5% of the population with fibromyalgia. By raising awareness of fibromyalgia among medical professionals, politicians and the general public, we hope to improve the knowledge and availability of treatment options. Fibroaction Visit Fibromyalgia Association UK Website pam.stewart@fmauk.org FibroAction is a dynamic national charity that was created because a group of people felt that raising awareness of Fibro in the UK was essential to the future wellbeing of everyone with the condition. Visit Fibroaction Website info@fibroaction.org Hypermobility The Hypermobility Syndrome Association (HMSA) is a charity run by and for people diagnosed with the Hypermobility Syndrome (HMS). What we do: The HMSA 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. We hope to assist sufferers to come to terms with the HMS and the distress that it can cause. Lupus UK Visit Hypermobility Website HMSA@arma.uk.net The Hypermobility Syndrome Association 49 Orchard Crescent Oreston, Plymouth PL9 7NF 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 6000 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. Visit Lupus Website headoffice@lupusuk.org.uk

9 The Musculoskeletal Association of Chartered Physiotherapist The Musculoskeletal Association of Chartered Physiotherapists (MACP) is a group of over 1100 physiotherapists, who are members of the Chartered Society of Physiotherapy. Myositis Support Group Visit MACP Website admin@macpweb.org The Myositis Support Group is a UK charity providing advice and support to individuals and their families affected by Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis. They also raise funds and promote medical research to improve the diagnosis, treatment, management and understanding of these rare illnesses. National Ankylosing Spondylitis Society The National Ankylosing Spondylitis Society (NASS) is the only registered charity dedicated to the needs of people affected by ankylosing spondylitis (AS) in the UK. Visit Myositis Support Group Website msg@myositis.org.uk 146 Newtown Road Woolston Southampton SO19 9HR Visit National Ankylosing Spondylitis Society Website admin@nass.co.uk National Osteoporosis Society The National Osteoporosis Society is the only UK wide charity dedicated to improving the diagnosis, prevention and treatment of osteoporosis. Their mission: To improve public awareness and understanding of osteoporosis. To influence health and social care provision to achieve excellence in the prevention, diagnosis and treatment of osteoporosis to prevent fragility fractures. Visit NOS Website info@nos.org.uk Tel: Camerton Bath BA2 0PJ To provide caring support and information to enable people affected by osteoporosis to make a positive difference to their lives.

10 The charity has a UK wide network of around 100 support groups which meet on a regular basis to offer support to sufferers of osteoporosis. Please click here to locate your nearest one. National Rheumatoid Arthritis Society The National Rheumatoid Arthritis Society (NRAS) is the only UK patient led charity exclusively dedicated to supporting the approximately 677,000 people in Britain with rheumatoid arthritis (RA), as well as their families, carers and the healthcare professionals who treat them. Visit National Rheumatoid Arthritis Society Website nras@dev.arma.uk.net Polymyalgia Rheumatica and Giant Cell Arteritis UK Polymyalgia Rheumatica & Giant Cell Arteritis UK (PMRGCAuk) is a registered charity established to meet the needs of people with these debilitating conditions by offering support, raising awareness and promoting research. Our organisation has started partsponsoring research into PMR and GCA. There were various reasons for setting up the Charity. It became apparent that patients had nowhere specific to obtain information or support for either Polymyalgia Rheumatica or Giant Cell Arteritis, which means there is not enough information for the general public to make them aware of these conditions, and how important it is to seek help. The two conditions are relatively unknown and neglected, although widespread, and doctors on the front line often do not recognise the early warning signs of these conditions, or know about some of their more serious complications. Visit PMRGCAUK Website info@pmrgcauk.com Tel: PMRGCAuk c/o BARC 2nd floor, Birmingham Central Library Chamberlain Square Birmingham B3 3HQ We aim to support People with PMR and GCA with information and advice, local groups, a helpline, newsletters and a forum shared with people who understand what they are going through.

11 Podiatry Rheumatic Care Association The Podiatry Rheumatic Care Association is an independent group working towards excellence in the care of rheumatic foot disorders through education and research. Visit Podiatry Rheumatic Care Association Website Primary Care Rheumatology Society The Primary Care Rheumatology Society (PCR)was set up in 1986 by a group of general practitioners with a special interest in Rheumatology. Visit Primary Care Rheumatology Society Website pcrs@arma.me.uk Psoroasis Scotland Arthritis Link Volunteers Psoroasis Scotland Arthritis Link Volunteers (PSALV) was launched in early 2004 as a charity based in Scotland, raising awareness and lobbying politicians. Visit Psoroasis Scotland Arthritis Link Volunteers Website PSALV@dev.arma.uk.net RSI Action RSI Action is the new national RSI (Repetitive Strain Injury) charity Visit RSI Action Website rsi@dev.arma.uk.net Rheumatoid Arthritis Surgical Society The Rheumatoid Arthritis Surgical Society was founded in 1973 in the firm belief of its founding Visit Rheumatoid Arthritis Surgical Society

12 members that the surgical care of rheumatoid patients was a true sub-specialty of Orthopaedic Surgery. rass@dev.arma.uk.net Royal College of Nursing Rheumatology Forum The Rheumatology forum deals with news; events; conferences and meetings; opinion; feature articles; consultation documents; useful links; resource material, such as books, manuals, websites, etc; and anything else you feel may benefit members within your professional community. Community Discussion Area Your Rheumatology Nursing Forum community discussion area is the place for you to interact with other community members and start a debate on any matter relevant to your community. In order to become a member of the Rheumatology Nursing community your first need to be a member of the Royal College of Nursing. RCN Society of Orthopaedic and Trauma Nursing Visit RCN-RF Website rcn_forum_communities/rheumatology ana.champou@rcn.org.uk Visit RCN Society of Orthopaedic and Trauma Nursing Website The Society of Orthopaedic and Trauma Nursing has its own area on the Royal College of Nursing's Discussion Zone where you can network with others in your specialty. You can read about and discuss: Events and courses Local groups Clinical corner SOTN news Letter from the Chair /rcn_forum_communities/orthopaedic_and_trauma lynne.newton@bedfordhospital.nhs.uk Contact Name: Lynne Newton Contact lynne.newton@bedfordhospital.nhs.uk

13 Scleroderma Society The Scleroderma Society was founded in 1982 to provide support for both people with scleroderma and their families. Everyone involved in the Society cares deeply about raising awareness and research for this rare condition and supporting those diagnosed with it. We are a well-respected and trusted organisation both in the UK and internationally, with a reputation for providing reliable and excellent information on scleroderma as well as for keeping members informed with up-to-date news and research from the world of scleroderma. Our services include a free helpline, an annual conference, a network of local groups across the UK, a members assistance fund, an online discussion forum, a popular quarterly newsletter and an extensive range of literature on scleroderma. We strive to increase awareness among the general public and the medical profession to improve early diagnosis and prognosis and participate in World Scleroderma Awareness Day. The Society, its volunteers and fundraisers, raise vital funds used for scientific and medical research into the causes and possible treatments for scleroderma. Helpline: am to 9.00pm The Scleroderma Society is a registered charity (No ) founded in Scottish Society for Rheumatology The Scottish Society for Rheumatology was founded in 2001, as successor to the longstanding Scottish Rheumatology Club. The Society aims To promote the development of scientific knowledge about Rheumatology To further the development of Rheumatology as a Specialty within Scotland Visit Scleroderma Society Website info@sclerodermasociety.co.uk Tel: Visit Scottish Society for Rheumatology Website SSR.admin@rcpe.ac.uk Tel: Department of Education, Training and Standards, 9 Queen St, Edinburgh, EH2 1JQ

14 UK Gout Society The UK Gout Society charity, launched in December Its mission and objectives are :- Visit UK Gout Society Website To provide basic information about this metabolic disorder for people who suffer from gout. To provide 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. To increase public awareness and knowledge about this painful, potentially disabling, but eminently treatable disorder. Contact UK Gout Society Secretariat P0 Box 527 LONDON WC1V 7YP