The latest HERU Blog post looks at the importance of 'Giving patients a voice in rare disease research'. We highlight ongoing work in HERU where we are undertaking an economic evaluation of genome-scale testing for the diagnosis of rare disorders in Scotland. The research aims to understand if genome-scale testing could be a cost-effective option for the NHS in Scotland and which aspects of genomic medicine are most valued by patients. The discussion includes a reflection of an event held for Developmental Disabilities Awareness Month in March where the HERU research was presented.
HERU Blog post on giving a patients a voice in rare disease research