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Information // Inclusion Body Myositis

Myositis UK Literature

Useful information from other organisations

Arthritis Research Campaign
Juvenile Dermatomyositis Research Group

Have an Information section on their website with leaflets to download or order these include an A-Z of drugs, other conditions like Rheumatoid Arthriris, Lupus, Raynauds etc and useful leaflets for everyday living.

Muscular Dystropy Campaign
Juvenile Dermatomyositis Research Group

Myositis is not a dystrophy but the MDC provides some information on Inclusion Body Myositis including a FactSheet, what a muscle biopsy entails, alternative therapies , self management pack, chairs, toilet frames, in fact the list is extensive so it is worth browsing their publications list.

Myositis Association
Juvenile Dermatomyositis Research Group

An American organisation for all Myositis including Inclusion Body Myositis. Membership is free. An extensive website includes information and up to date reliable information regarding research and details of investigations for a diagnosis and their factsheet. Useful community area including live podcasts.

Arthritis Care
Juvenile Dermatomyositis Research Group

Is a UK charity for arthritis but some of their leaflets contain useful information which is applicable to persons with Myositis. Including those on Keeping Active, Tackling Pain, Medications, Physiotherapy and Occupational Therapy. You will also find extensive PDFs about Benefits including the new PIPs. In addition to their guides they also hold workshops for people with long-term conditions, not just people with arthritis.

Know of a useful organisation that should be listed here? Please email us so we can update the page.

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