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/IMG_20230214_094714_370x280_800_600_s_c1.jpg)
Beth’s NF1 story
"I had no idea what NF was until I got diagnosed with it." Beth shares her NF1 journey to help raise awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/WhatsApp_Image_2023-05-18_at_00.36.57_Front_370x280_800_600_s_c1.jpg)
Shine A Light 2023
The Shine A Light 2023 campaign had 162 buildings around the UK & the Republic of Ireland lit up in blue!
Read More![](https://nervetumours.org.uk/images/made/images/common/Christine_Grant__Margaret__Sheila__Maureen_370x280_800_600_s_c1.jpg)
Christine’s Coronation fundraising
Christine has been fundraising for NTUK for 10 years, since her grandson was diagnosed with NF1.
Read More![](https://nervetumours.org.uk/images/made/images/common/PXL_20220930_101710232_370x280_800_600_s_c1.jpg)
Megan’s NF1 story
Megan has NF1 & other complications: "I will always live my life to the fullest and not let my diagnosis stand in my way"
Read More![](https://nervetumours.org.uk/images/made/images/common/NTUK_Shine_A_Light_2023_website_banner_V2_370x280_800_600_s_c1.jpg)
Shine a Light May 2023
Shine A Light Activities during World NF Month May 2023 - Get Involved!
Read More![](https://nervetumours.org.uk/images/made/images/common/image1_(11)_370x280_800_600_s_c1.jpg)
Charlotte’s NF1 story
Charlotte and her brother & dad have NF1. She is running the Shine a Light Marathon during May to raise awareness
Read More![](https://nervetumours.org.uk/images/made/images/common/Screenshot_2023-05-10_174650_370x280_800_600_s_c1.jpg)
Be seen, be counted: #PicsForThe1in6
Be part of the Neurological Alliance's photo collage, representing people with neurological conditions
Read More![](https://nervetumours.org.uk/images/made/images/common/Sequentis_Health_NF1_PN_cover_370x280_800_600_s_c1.jpg)
Understand the experience of adults living with Neurofibromatosis Type I with Plexiform Neurofibromas (NF1 PN)
Research to understand the reality of the NF1 PN journey from diagnosis to daily life, and the emotional impact that has
Read More