1. Welcome

‘The idea of bringing together clinicians, patients and carers to discuss research priorities seems obvious – why shouldn’t all those affected have a chance to jointly discuss frustrations about the things we don’t know, and aspirations for the future?’
Patient involved in the Sight Loss and Vision PSP
We are inviting members of Genetic Alliance UK to join our Rare Disease Priority Setting Partnership (PSP) to find out what research is important to your patients and service users, carers and relatives, and clinicians and other healthcare professionals. We will be using a tried and tested method – you can read more about it here. This is a robust method that enables patients, carers and clinicians to come together on an equal footing to develop a ‘top 10’ (plus a longer) list of unanswered research questions in order of priority.

Please click 'Next' to make your expression of interest.