The Rare Autoimmune Rheumatic Diseases Patient Survey

The Rare Autoimmune Rheumatic Diseases Patient Survey

This survey has been developed on behalf of the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA), a partnership that was formed in 2016 to improve the quality of life of people living with rare autoimmune rheumatic diseases. The founding partners of the Alliance are:

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LUPUS UK Scleroderma & Raynauds UK Vasculitis UK British Society for Rheumatology

Although these diseases appear to be different, many of the problems experienced by those living with these diseases are very similar.

The purpose of this survey is to get a more complete picture of the experiences of people living with these conditions in order to identify areas of improvement in the way care and support is provided. The findings of this survey will be used in a report that will highlight these issues to the Department of Health, Parliament and other key organisations, with a view to working together to improve care.

As this survey is being circulated to people with a variety of conditions and their carers, when the questionnaire asks about ‘your condition’, we would like you to respond with your main medical condition at the front of your mind. The survey is for people over the age of 18 who are living in the UK. All the data collected in this survey will be anonymous. If you feel unable to answer a particular question, please carry on with the next question, as we really value all your contributions to this survey.

Thank you for taking the time to complete this survey.

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