Edinburgh Local Peer Support Group

Please come along to this special focus group meeting at which Roly hopes to establish a Patient and Public Involvement (PPI) group that will guide research on inherited retinal disorders (IRDs) at the University of Edinburgh, NHS Scotland and beyond.

Roly says: “The aim of a PPI group is to ensure research is carried out ‘with’ or ‘by’ affected patients, family members and members of the public rather than ‘to’, ‘about’ or ‘for’ them. Whilst we may be experts in understanding clinical disease, available treatment options and research approaches, it is patients and their families who are experts in the impact of these conditions and therefore what the biggest needs for the community are”.

“To this end, we wish to establish a group of patients and their families who have lived the conditions that we research and with whom we will work closely to shape future grant applications / research projects etc. By doing so, we will avoid wasting precious funds raised by our eye charities on low impact research projects and will instead increase the chances of us making a significant difference to IRD patients”.

We hope you are able to come along to this interactive group discussion and have your say.

Please meet up with Valerie by 10.45am at the entrance to the Eye Pavilion where you will be guided to the lecture theatre.

Please could we ask that you register via the form below so we know who to expect on the day, thank you and we look forward to seeing you there!

Venue

Princess Alexandra Eye Pavilion
Chalmers Street
Edinburgh
EH3 9HA