Useful links

Arthritis related patient organisations & local support groups...

Arthritis Care:

Arthritis Care offers information and support to everyone affected by arthritis.
Helpline: 0808 800 4050
Email: info@arthritiscare.org.uk
Website: www.arthritiscare.org.uk          

Arthritis Research UK:

Arthritis Research UK exists to prevent the onset of arthritis, develop a cure for arthritis and transform the lives of those with arthritis (now and in the future).

Telephone: 0300 790 0400
Email: enquiries@arthritisresearchuk.org
Website: http://www.arthritisresearchuk.org 

National Rheumatoid Arthritis Society:

Support for people affected by rheumatoid arthritis or juvenile idiopathic arthritis.

Helpline: 0800 298 7650                                                        
Email:  helpline@nras.org.uk
Website: www.nras.org.uk

There are NRAS support groups in the East and West-Midlands areas: Heart of England NRAS Group - Solihull; Leicester NRAS Group; Lincoln NRAS Group & Worcester NRAS Group.

For more information about the groups, contact NRAS on 0845 458 3969 / 01628 823524

Email: enquiries@nras.org.uk

Osteoarthritis:

There is no national organisation but there is information available at:

http://www.ageuk.org.uk

http://www.arthritisresearchuk.org

http://www.nhs.uk/conditions/Osteoarthritis/Pages/Introduction.aspx

Local support groups:

Rheumatology Patient Group at the Queen Elizabeth Hospital, Birmingham For further information, please contact Fiona Maggs fiona.maggs@uhb.nhs.uk 

See also local rheumatology patient groups

Rheumatology Support Group; Sandwell and West Birmingham Hospitals The support group meets regularly. Further details are available from: Barry Austin on 07973 838021 or rheumgroupswbh@gmail.com

See also See also local rheumatology patient groups

Dudley Rheumatoid Arthritis Support Group (non-NRAS group) 

Telephone: 01902 676136 or 01902 885734

 

Wolverhampton Rheumatology Support Group (WRSG) (non-NRAS group)

Telephone: 01902 563 751; Email: lizwalker_wrsg@hotmail.com                                                

 

Other patient organisations...

Lupus UK:

Provides information about diagnosis and available treatments for people living with Lupus.

Tel: 01708 731251 (Monday to Friday 9am to 5pm)
Email: headoffice@lupusuk.org.uk
Website: www.lupusuk.org.uk

British Sjögren's Syndrome Association:

To raise awareness of the disease and support research into its cause and treatment.

Helpline number: 0121 478 1133. 
Website: http://www.bssa.uk.net 

Fibromyalgia Association UK:

Support, advice and information for people with fibromyalgia.

National Helpline 0300 999 3333(10am - 4pm Mon to Fri)

Email: fmauk@hotmail.com
Website: www.fibromyalgia-associationuk.org

National Ankylosing Spondylitis Society:

Provides support, advice and information about Ankylosing Spondylitis.

Tel: 020 8948 9117
Email: admin@nass.co.uk
Website: www.nass.co.uk

Psoriasis & Psoriatic Arthritis Alliance:

Provides information, publications and training on psoriasis and psoriatic arthritis.
Telephone: 01923 672837 (Enquiry line open 9:30am - 4:30pm - Recorded message out of hours)
E-mail: info@papaa.org
Website: www.papaa.org 

National Association for the Relief of Paget's Disease:

Support and information on available treatments for people with Paget's disease.

Nurse Helpline: 07713 568 197
Email: helpline@paget.org.uk
Website: www.paget.org.uk 

National Osteoporosis Society:

Information, research and details of support groups for people with osteoporosis.

Helpline: 0808 800 0035
Email: info@nos.org.uk 
Website: www.nos.org.uk

Behçet’s Syndrome Society:

The Behçet's Syndrome Society represents Behçet's disease patients and their carers in the UK.

Helpline: 0345 130 7329
Email: info@behcetsdisease.org.uk
Website: http://www.behcets.org.uk
Birmingham details - email address: behcetsbham@nhs.net 

UK Gout Society:

The UK Gout Society provides basic information to people living with gout, their families, friends and carers - and increase public awareness about this painful, potentially disabling, but very treatable, disorder.

Email: info@ukgoutsociety.org
Website: http://www.ukgoutsociety.org 

Hypermobility Syndromes Association:

The HMSA offers both practical support health and care information to people who have a hypermobility syndrome or who are involved in the care of someone with any of the hypermobility syndromes, including Hypermobility Spectrum Disorder (HSD), Joint Hypermobility Syndrome, Ehlers-Danlos syndrome (all sub-types), Marfan syndrome, Sticklers and Osteogenesis Imperfecta.

Telephone Number: 033 3011 6388
Email: webmaster@hypermobility.org
Website: http://hypermobility.org 

Vasculitis UK:

Supports those suffering from vasculitic diseases and their families by providing information and advice.

Helpline: 0300 365 0075
Email: john.mills@vasculitis.org.uklynn@vasculitis.org.uk
Website: http://www.vasculitis.org.uk 

Lauren Currie Twilight Foundation:

The Lauren Currie Twilight Foundation is a charity committed to providing support for people affected by Vasculitis.

Telephone: 0141 404 1184
Email: info@thelaurencurrietwilightfoundation.org
Website: https://www.thelaurencurrietwilightfoundation.org 

Useful links for Patient Research Partners

  • INVOLVE:

INVOLVE is an organisation that supports greater public involvement in NHS, public health and social care research. Provides information both to patients and public thinking about becoming involved in research and researchers thinking about PPI.

Tel: 023 8065 1088 
Fax: 023 8065 2885 
Email: admin@invo.org.uk 
Website: http://www.invo.org.uk/  
o Public Involvement Pack (PIP): http://www.invo.org.uk/posttypepublication/the-public-information-pack-pip/   
o Jargon buster: http://www.invo.org.uk/resource-centre/useful-information/jargon-buster/ 

Patients and the public

This site is for patients and members of the public looking for information on the research the Health Research Authority regulates and approves, taking part or getting involved in research and how the HRA involves the public in the work they do.

Find out more

Eular

The national organisations of people with arthritis/rheumatism across Europe work together via the EULAR Standing Committee of PARE. Each member country is represented with one delegate in the committee. The standing committee meets annually on the occasion of the EULAR congress to review progress and plan future activities. Throughout the year, liaison persons, appointed by the organisations, ensure a smooth communication flow.

Find out more

 

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