Media volunteers needed!

Launch of RDUK publication: "Experiences of Rare Diseases: An insight from patients and families"

You may recall that over the summer we sent out a survey on patients’ and families’ experiences of rare diseases. We received a fantastic 600 responses. We are in the process of completing a publication to outline the results of the survey. The publication: “Experiences of Rare Diseases: An insight from patients and families” is due to be launched in November.

To accompany the launch we are hoping to get media coverage to raise awareness of rare diseases and some of the issues patients and families face in areas such as:

- accessing a correct and timely diagnosis
- the availability of information about the condition
- accessing the range of support needed
- accessing treatment
- coordination of care
- the availability of information and the ability to participate in research

If you are interested in raising awareness of the need for a strategy for rare diseases and are willing for your story to appear or to be interviewed by the media, please could you download and complete the form below and return it to us. This is really helpful as it means we can move quickly if there is any interest from the media.

Download the form (Word doc.)