RDUK would like input to the on Centres of Excellence. The survey is open to all UK home nations, however we particularly need participants from Scotland, Wales and Northern Ireland
Rare Disease UK is undertaking a project which will capture the requirements of those affected by a rare disease and all those that support them and develop a clear understanding of a Centre 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. These include:
Adequate caseload for expertise (e.g. a sufficient number of patients);
Not dependent on a single clinician;
Arrangements for transition from children’s to adults’ services;
Engaged with people with rare conditions;
RDUK is in agreement with these points; however, we believe having input from our individuals affected by rare conditions in the development of these centres is essential.
A key part of this research involves gathering your views and experiences.
We would be grateful if you could complete our survey about your experiences and thoughts on Centres of Excellence. Even if you are not associated with a Centre of Excellence, your thoughts are extremely important in helping us with the development of this project.
If you are living with a rare condition, or you are a carer or have been a carer in the last two years, you can complete the survey here: https://www.surveymonkey.com/s/centresofexcellence
If you are an industry or patient organisation representative, a clinician or academic researcher, you can complete the survey here: https://www.surveymonkey.com/s/rdukCofE
Each survey should take no longer than 10 minutes to complete. The closing date is 20th May.
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