Research Officer - Rare Disease UK
I am working on the Rare Disease UK (RDUK) campaign. I am responsible for researching, writing and producing a report on the ‘Centres of Excellence’.
The Consultation by the Government on the UK Plan for Rare Diseases recognises the need to have Centres of Excellence and outlines several key characteristics that must be present in order to be identified as an expert centre. RDUK is in agreement with these points; however, we believe having input from our members of these centres is essential. By undertaking this research we hope to capture the requirements of those affected by a rare disease and all who support them and develop a clear understanding of what a Centre of Excellence should be.