|New Research Study In Care Coordination For Rare Conditions|
|New research study investigating how care should be coordinated for rare conditions
COordiNated Care Of Rare Diseases (CONCORD) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients and families would like them to be coordinated.
It is being run by a partnership of patient groups, academics and the Genetic Alliance.
Carole Hagan, a lay member on the TSA’s Research Committee, has been invited to sit on the patient advisory group for the study.
More information about the study can be found on the Genetic Alliance’s website: www.geneticalliance.org.uk/news-event/new-research-how-care-should-be-coordinated-for-rare-diseases
There are a number of opportunities to be involved in this important work through taking part in focus groups. There is one planned online on 11 December 2018 and in one in person in Birmingham on 6 February 2019.
The following document tells you how to find our more about getting involved and how to contact the research team based at University College London: www.geneticalliance.org.uk/news-event/new-research-how-care-should-be-coordinated-for-rare-diseases/recruitment-advert-patients-and-carers-scoping-review-focus-groups-v1-1-23-10-18-for-use