NIHR Rare Eye Disease Day 2017

Nowgen Centre, Saturday 4th March

Thank you

Professor Graeme Black giving the introductory talk at the NIHR Rare Eye Disease Day 2017

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.

A piece of TACTILE art in Whitworth Art Gallery, Manchester, in place for Rare Eye Disease Day 2017

The TACTILE art exhibition from Whitworth Art Gallery was also enjoyed by those attending. For more information please contact Stuart Ingram, 0161 701 9138.

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.


Manchester eye genetics team representatives Graeme Black, Georgina Hall, and Stuart Ingram at NIHR Rare Eye Disease Day 2017

  1. Research priorities (facilitated by Professor G Black and Professor A Webster)
  2. Developing a service for an Eye Clinic Liaison Officer in the Genetic Eye clinic (facilitated by Georgina Hall)
  3. Written information and research consent forms for VI people (facilitated by Stuart Ingram)