On Tuesday 19 January 2016, our campaign Rare Disease UK launched a report looking at patient experi…
When living with a rare condition, it can be very easy to never meet another person with the same condition, and information and support can be scarce and difficult to access. Patient groups can be invaluable in this situation, bringing patients together to share information and advice.
As an alliance of over 180 patient groups, we see daily the positive impact such groups can have on individuals through offering support, and on wider society through campaigns and lobbying. This is why we are supporting patients who have no dedicated organisation to set up their own patient group.
Our project, Helping Patients, has already been running successfully in Scotland and Wales, and we are now launching the project in England to help develop patient groups for conditions where none exist. From finding others to join the new group, to booking a first meeting room, to spreading the word on social media, setting up a patient group from scratch can be a difficult process. We want to help by using our greatest resource – our member groups who have done it all before.
The knowledge and experience gathered from member groups, both large and small, has helped us understand how to establish a group that can make a difference to the lives of those living with a genetic condition, whether that’s by simply creating Facebook group to share information, or running national campaigns to change the way the NHS works for patients.
If you are living with a rare condition with no patient group, or if you are a patient group that represents one or more conditions that you feel could benefit from its own, focused support network, we want to hear from you. To find out more about Helping Patients, and about getting started on running a patient group, email our Public Engagement Officer Angela.