Rare Disease UK (RDUK) 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 our campaigning and awareness raising work. The more people that participate, the more weight the results will carry!

The results of the survey will:

• Help gain an understanding of some of the issues that matter to patients and families
• Be presented 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.

The survey should take no longer than 20 minutes to complete and 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.

• Participate in the survey online

Or, if you want to be sent a paper copy, call 020 7704 3141.