Rare Diseases survey for familes and friends

We are publicising details of a survey that Rare Disease UK is conducting to help build a picture of rare disease in the  UK from the perspective of patients, families and carers

This survey will be crucial in facilitating  campaigning and awareness raising work. The results of the survey will:

  • Help gain an understanding of some of the issues that matter to patients and families
  • Be put to politicians and policy makers to highlight areas of concern/good practice
  • Be published in a new RDUK booklet of patients’ and families’ experiences – this will be launched at a reception at the House of Commons in the autumn
  • Help inform our working groups and our report into a strategy for rare diseases (which will be launched on Rare Disease Day 2011)
  • Assist in raising awareness of rare diseases through the media

By participating in the survey you really will be helping to inform our work. If you are a patient organisation, please encourage your members to respond; if you work with people affected by a rare disease, please let them know about the survey. The more people that participate the more weight the results will carry!

The survey should take no longer than 20 minutes to complete. There are boxes at the end of every page if you would like to elaborate on your answers – all the additional information we receive will be extremely helpful, especially to inform the report on a strategy for rare diseases.

The survey is spilt into sections looking into:

  1. Research
  2. Diagnosis
  3. Commissioning and planning (treatment and specialist centres)
  4. Information and support
  5. Accessing coordinated care

The deadline for responses is the 31st of July

To participate in the survey please visit the following website:


If you require a paper copy, or if you would like paper copies to send to other people, please contact Stephen or Lauren at stephen@raredisease.org.uk or lauren@raredisease.org.uk 020 7704 3141

Thank you in advance for your help!

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