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/blackpool-tower-blackpool-magic-conventionPage-Preview-800-x-500-px_800_600_s_c1.png)
Blackpool Magic Convention 2020
Find out more about the convention in aid of NTUK and how you can get involved here:
Read More![](https://nervetumours.org.uk/images/made/images/common/2019-reviewPage-Preview-800-x-500-px_800_600_s_c1.png)
Reflections on 2019
Check out our reflection on what we feel was an incredibly succesful 2019 for the charity:
Read More![](https://nervetumours.org.uk/images/made/images/common/helen-and-pauline-Page-Preview-800-x-500-px_800_600_s_c1.png)
Helen’s Story as told by her Mum Pauline
Due to her NF1, Helen has faced several struggles. Mum Pauline has openly shared her daughter's experiences with us here:
Read More![](https://nervetumours.org.uk/images/made/images/common/NicolaPage-Preview-800-x-500-px_800_600_s_c1.png)
Nicola’s NF2 Journey
Nicola creates her own YouTube videos to help promote NF2 awareness. Find out more about her NF2 journey here:
Read More![](https://nervetumours.org.uk/images/made/images/common/James-partidge-article-novemberPage-Preview-800-x-500-px_800_600_s_c1.png)
Making the Future of Work inclusive of persons with disability
Check out James' recent presentation at a conference in Geneva highlighting issues of "face equality" in the workplace
Read More![](https://nervetumours.org.uk/images/made/images/common/carolynPage-Preview-800-x-500-px_800_600_s_c1.png)
The Royal Society - A Quest for the perfect Human…? A debate on the implications of human genome editing
Find out more about the debate recently undertaken at The Royal Society here:
Read More![](https://nervetumours.org.uk/images/made/images/common/CARDesktop-1600-x-900-px-copy_800_600_s_c1.png)
Appearance Matters: Prof Diana Harcourt and Maia Thornton
Find out both Diana's and Maia's views on their work and the importance of their work for people with NF:
Read More![](https://nervetumours.org.uk/images/made/images/common/Jane-francesPage-Preview-800-x-500-px_800_600_s_c1.png)
Jane Frances
Here Jane Frances tells us how findings from psychological research can help parents and teachers of children with NF
Read More![](https://nervetumours.org.uk/images/made/images/common/Sarah-Page-Preview-800-x-500-px_800_600_s_c1.png)
Sarah’s Story
Sarah has NF1 and works full time for the NHS check out her intriguing story here
Read More