Nowgen Centre, Saturday 4th March
Thank you to the patients, carers and family members who attended our Rare Eye Disease Day funded and organised by NIHR. We have summarised our findings to feed back to the NIHR and the UK Eye Genetics Group for future research and service planning.
Over 70 patients, carers/relatives and healthcare professionals attended an information day last Saturday at the NOWGEN Centre to find out about the latest research in this area. Speakers included Prof Paul Bishop (University of Manchester), Prof Graeme Black (MFT), Prof Andrew Webster (University College London) and Ms Georgina Hall (MFT). The group discussed current and future research opportunities, stem cell and gene therapy, counselling support and the direction of genomic medicine and research. A series of workshops was held to allow attendees to give input on a range of issues including consent processes for visually impaired patients, inclusion in research opportunities and patient experiences, which will be fed back into the research design process.
Overall, the day demonstrated the value of the NIHR-TRC to energise research into rare diseases and helped to improve wider geographical engagement. The ability to draw on general and specific expertise and to support engagement between centres has been extremely valuable.