Rare disease patient experience survey

Welcome to the Rare Disease UK patient survey. Rare Disease UK is an initiative of the charity Genetic Alliance UK. Anyone who cares for, or is affected by, a rare or undiagnosed disease is welcome to complete the survey.

You will probably know if you have a rare condition, as a doctor will have told you, or no one you know has heard of it. Almost every genetic condition is rare. Alternatively, if clinicians are having a hard time diagnosing the condition, then it’s probably rare. The European definition of rare is a prevalence of fewer than 1 in 2,000. If you think a condition is rare or it hasn’t been diagnosed, then we’d like to hear from you.

We hope you will take the time to complete the survey – it should take around 25 minutes to answer the questions. You can leave the survey at any point and return to finish it at a later date if needed.

All the information you provide will be confidential. No individual or identifiable information will be shared with any outside person or organisation. The results will be aggregated and made anonymous. You do not have to provide us with any information that may identify you.

The responses you provide will be vital to give us a full, up-to-date picture of the experiences of patients of rare diseases. The findings will be published in late 2015 and will be widely disseminated locally and nationally to highlight the needs of patients with rare diseases. By participating in this survey you are agreeing that the information you provide can be used anonymously for policy work at Rare Disease UK and Genetic Alliance UK.

As you may recall we previously carried out a survey that was published in 2010. This was the first survey of its kind to bring together the experiences of rare disease patients and the report has been invaluable to the influencing and campaigning work of both us and our members.

This survey is in part a follow up to the previous survey, we apologise if the questions feel familiar. You will be asked at times to recall your experiences in the last 5 years, or since you have received your diagnosis. Please answer the questions as best you can. Your answers will help us to understand the current experiences of patients with rare or undiagnosed conditions and to identify whether there has been progress in the last five years.

If you have any questions about the survey and how your results will be used or if you would like this in another format or the Welsh language, please do not hesitate to get in touch by emailing emily.muir@raredisease.org.uk or calling 020 7704 3141. For more information about Rare Disease UK please visit our website: http://www.raredisease.org.uk/

For more information about Genetic Alliance UK please visit our website: http://www.geneticalliance.org.uk/

Genetic Alliance UK is a registered charity numbers: 1114195 and SC039299
Registered company number: 05772999

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