The new ‘Rare Disease Framework’, to replace the current UK Strategy for Rare Diseases, will shortly be launched. We all…
Category: Research
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…