Our Work

Centres of Excellence for Rare Diseases (2013)

Last Reviewed 28/02/2013

Many of the patients we work with are not sure what type of service a Centre of Excellence provides and whether the hospital they attend is a Centre of Excellence. This is understandable as there is no official definition for a Centre of Excellence.

A Centre of Excellence is essentially a specialist clinic where expert health professionals come together to provide the very best care and treatment for patients affected conditions that affects a number of organs and tissues (multisystem disorders). There are different centres for different types of conditions.

Centres of Excellence can be virtual networks of expert health professionals (based at a number of connected hospitals) or can be based within one hospital building. They should work with local healthcare services to manage a patient’s condition. The UK Strategy for Rare Diseases lists a number of key characteristics that every Centre of Excellence should have. For example, centres should provide coordinated care, make arrangements for children to transition into adult services, and be engaged with people with rare conditions.

Centres of Excellence should also have a sufficient number of patients under their care – they can’t say they are an expert based on one patient! They also have to be doing research, because research into rare diseases is vital to improve diagnosis, care provision and to enable the development of new treatments. They can do this in a number of ways, such as clinical research within the centre or supporting registries to collect and share information safely and securely to help other researchers better understand conditions. Centres of Excellence are great places to do this because they bring together both patients and clinical expertise under one roof.

In our study carried on Centres of Excellence, we found that when Centres of Excellence work with patient organisations they can get better at informing and supporting patients. Alongside the recommendations identified in UK Strategy for Rare Diseases, our study found two additional characteristics that every Centre of Excellence should have. They are that: Centres should provide education and training for healthcare professionals to share expertise; and that Centres should share knowledge with other Centres of Excellence and specialist clinics to make sure the best rare disease care standards are available to all.

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