COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how services are currently coordinated for rare conditions and how they should be coordinated in the future. The study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with Genetic Alliance UK and others.
The research team are currently looking for patients, carers and healthcare professionals to share their priorities and views about the coordination of care for rare conditions, via an online survey. For most people, the survey will take around 30 minutes to complete. The findings will be used to make recommendations with the aim of influencing policy.
You must be 18 or over to complete the survey. If you are under 18, a parent or carer can complete on the survey on your behalf. The survey closes on Sunday 8th December.
You can read more about the survey and study here (https://www.geneticalliance.org.uk/news-event/have-your-say-on-care-coordination/).