What is the CONCORD project?

CONCORD (CoOrdiNated Care Of Rare Diseases) is funded by the NIHR Health Services and Delivery Research Programme and led by Professor Steve Morris. It is a collaboration between University College London (UCL), University of Cambridge, Genetic Alliance UK and patient representatives.

CONCORD looked at how care of people with rare diseases is coordinated in the UK and how patients, families and healthcare professionals who treat rare diseases would like care to be coordinated.

The webinar will include key findings from the study:

What does coordinated care mean?
Is care coordinated in the UK, and how?
What type of care coordination do patients, families and professionals prefer?
What are the different ways that care can be coordinated for rare conditions?

It will also look at how patients and the public have been involved in CONCORD and overarching key findings from CONCORD and next steps.

Speakers:

Professor Steve Morris, University of Cambridge
Dr Amy Hunter, Genetic Alliance UK (Chair)
Dr Holly Walton, University College London
Professor Lara Bloom, The Ehlers-Danlos Society
Kerry Leeson-Beevers, Alström Syndrome UK

Attendees will be able to ask questions.

A graphic facilitator will be present to produce a visual summary (live) of the webinar.

CoOrdiNated Care Of Rare Diseases (CONCORD) End of Study Webinar