Rare Disease UK Survey on Centres of Excellence

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:

Coordinated Care;

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;

Research Active.

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.

If you would like more information on the project, please contact Devinder Degun on This email address is being protected from spambots. You need JavaScript enabled to view it. or on 020 7704 3141.


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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