Dr Clare Pain (Alder Hey), together with colleagues, have had their research published, as an advanced article in Rheumatology, Oxford Academic, charting the incidence and…
Category: Research
Patient Telemedicine Survey
The COVID–19 Global Rheumatology Alliance are asking for adult patients with a rheumatic disease or the parents/caregivers of a child…
Exploring medication adherence in Behçet’s Disease in the context of COVID-19: qualitative study
PhD Researcher, Behçet’s UK member, and Behçet’s patient Fay Sweeting is working with Dr. Emily Arden-Close at Bournemouth University to…
COVID-19 Patient Survey
Behçet’s Patients Support have been asked by their colleagues at the London Centre of Excellence to help with another survey.…
Genetic Alliance Patient Experience Survey
The new ‘Rare Disease Framework’, to replace the current UK Strategy for Rare Diseases, will shortly be launched. We all…
RAIRDA Survey – Please share your experiences during the Covid-19 outbreak
UPDATE 15/05/20 This survey has now closed but you can still contact RAIRDA to share your experiences. The Rare Autoimmune…
CONCORD Focus Group
COordiNated Care Of Rare Diseases (CONCORD) The CONCORD research team would like to find a few more people to take…
CONCORD Research Project – Survey Responses Needed!
Genetic Alliance UK are delighted to announce that their CONCORD research project is now live. COordiNated Care Of Rare Diseases…
Bio Behçet’s Trial
The Bio Behçet’s trial The Bio Behçet’s trial aims to understand more about the different ways of treating Behçet’s. It…
Help create a national register for people with rare rheumatic diseases
Please see this ‘Patient and Public Involvement’ poster. PPI is now mandated for all medical research that affects patients. If…