Rare Disease UK is conducting a survey of patients’ and families’ experiences of access to care, treatment and support in the UK.

This survey will be crucial in facilitating the 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 the work of Rare Disease UK.  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:

• Research
• Diagnosis
• Commissioning and planning (treatment and specialist centres)
• Information and support
• Accessing coordinated care

The deadline for responses is the 31st of July

To participate in the survey click here.