Page 1 of 1

Urgent patient experience required

PostPosted: Thu May 16, 2013 3:48 pm
by Pat
Urgent Patient Experience Required!

Have you recently attended a regional genetic centre in England? If so, we need your help!

Rare Disease UK has been invited by the Department of Health to speak at an upcoming event looking at genetic services, on Friday 24 May in London. It is an internal departmental meeting, which is being held by the Health Science and Bioethics Division.

Rare Disease UK will be attending the meeting to give an overview of the positive impact that genetic services and developing technologies can have on patients and where improvements can be made.

However, we need you! We would like to take someone along that can give a firsthand patient experience. If you are happy to speak (for no more than 10 minutes) about your recent experience of a genetic service and how it has helped you in understanding more about your condition, or perhaps enabled you to obtain a diagnosis please get in touch. It will help remind those present at the meeting of the value of genetic services to patients.

If you would like to know more, or are interested in taking part please contact Farhana Ali, RDUK Executive Officer - Farhana@raredisease.org.uk