Coordinated Care of Rare Diseases Study at UCL
24 March 2021
Coordinated Care of Rare Diseases Study at UCL
CONCORD (Coordinated Care of Rare Diseases) is a research study that looks at how the 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 study is funded by the National Institute for Health Research and is being led by researchers at University College London, in collaboration with NHS Institutions and charitable partners. Nerve Tumours UK is not involved in any content or development of the study, however, we do support their research.
The Findings of the study cover the following:
- 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 also looked at how patients and the public have been involved in CONCORD and overarching key findings from CONCORD and next steps.
Watch the Webinar and download the papers below.
Filter News
![](https://nervetumours.org.uk/images/made/images/common/Genna_NF_Story_370x280_800_600_s_c1.jpg)
Geena’s Story
James Harkness talks about his late mother Geena Andrews & what Nerve Tumours UK meant to her.
Read More![](https://nervetumours.org.uk/images/made/images/common/Xmas-Party-Heroes-Web-5_Donation370x280_800_600_s_c1.jpg)
Xmas Party Superheroes
Had your Xmas party cancelled? Find out how you can save the day & become instant #XmasPartyHeroes
Read More![](https://nervetumours.org.uk/images/made/images/common/lee_Paterson_Virtual_Santa_Dash_for_NF_370x280_800_600_s_c1.jpg)
Lee’s Santa Dash
Check out Lee's Festive Santa Dash for NF and see how you can get involved
Read More![](https://nervetumours.org.uk/images/made/images/common/Karen__NF_Community_370x280_800_600_s_c1.jpg)
Thinking Forward to 2021 - A Message from our Charity Director
A message from Karen our Charity Director on looking forward to the year ahead
Read More![](https://nervetumours.org.uk/images/made/images/common/RAREfest20-eventbrite-email-image-2_370x280_800_600_s_c1.jpg)
Rarefest 2020
RAREfest20: a free virtual, interactive science, technology, advocacy & arts exhibition with a rare twist. Visit exhibition
Read More![](https://nervetumours.org.uk/images/made/images/common/derek_370x280_800_600_s_c1.jpg)
Kebabathon for Nerve Tumours UK
Find out why Des is taking on this Mammoth Meat Mission for Nerve Tumours UK
Read More![](https://nervetumours.org.uk/images/made/images/common/Artboard_5_800_600_s_c1.jpg)
Coronavirus and your Mental Health
Mind offers support and advice to help you cope with the impacts of Coronavirus on your mental health and wellbeing.
Read More