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/Sarah_Shine_A_Light_on_Neurofibromatosis_-_370x280-preview_800_600_s_c1.jpg)
Sarah’s Story as told by her Father Clemence
Read more about Sarah's story and her Shining a Light on NF from home for World NF Awareness Day!
Read More![](https://nervetumours.org.uk/images/made/images/common/helen-tomkins_370x280_800_600_s_c1.png)
Statement by Helen Tomkins our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Helen Tomkins specialist Neurofibromatosis nurse in Devon & Cornwall
Read More![](https://nervetumours.org.uk/images/made/images/common/Courtney_Deaken_Story-_370x280_800_600_s_c1.png)
Courtney’s Story
Read more about Courtney's NF Story and how she overcomes her difficulties
Read More![](https://nervetumours.org.uk/images/made/images/common/Toms_NF2_Story_-_No_Laughing_Matter_preview_website_370x280_800_600_s_c1.png)
No Laughing Matter
Tom is a former journalist, here he describes his journey from music journalism to comedy, & what his NF2 has to do with it
Read More![](https://nervetumours.org.uk/images/made/images/common/Shine-a-Light_1600x900px_1600_900_80_s_c1StaySafepreview_800_600_s_c1.png)
Shine A Light on Neurofibromatosis 2020
Find out what we're up to for our Shine A Light campaign this year!
Read More![](https://nervetumours.org.uk/images/made/images/common/Michael_Fry_Preview_Coronavirus_Statement_370x280_800_600_s_c1.png)
Statement by Michael Fry our Chair of the Board of Trustees
The impact of the corona virus on the charity sector and Nerve Tumours UK's continued support to those affected by NF
Read More![](https://nervetumours.org.uk/images/made/images/common/person-holding-blue-ballpoint-pen-on-white-notebook-669610nologopreview_800_600_s_c1.png)
NF1, Plexiform Neurofibromas Market Research Study
Find out more about an NF1, Plexiform Neurofibromas market research survey
Read More![](https://nervetumours.org.uk/images/made/images/common/Rebecca_Rennison__Rachel_Jonesa_800_600_s_c1.png)
Statement by Rachel Jones & Rebecca Rennison our Specialist Neurofibromatosis Nurses UK
A statement on coronavirus by Rachel Jones & Rebecca Rennison specialist Neurofibromatosis nurses in the North East & Cumbria
Read More![](https://nervetumours.org.uk/images/made/images/common/samantha-gaden_370x280_800_600_s_c1.png)
Statement by Samantha Gaden our Specialist Neurofibromatosis Nurse UK
A statement on coronavirus by Samantha Gaden specialist Neurofibromatosis nurse in the North West
Read More