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Care delivery

We take a multidisciplinary approach to healthcare, involving specialists from a wide range of areas.

An innovative and integrated 360° approach to care

'Our Centre benefits from the direct membership of over 45 clinical academics and healthcare professionals. These professionals deliver expert clinical services for rare disease patients at a regional, national and international level.'

Dr. Michael Wright, Deputy Medical Director Newcastle Hospitals

Our teams aim to identify good practices across our established clinical areas. They then explore their relevance and expansion to other conditions. In so doing, we are particularly conscious of the need for centres of expertise in rare disease. This is the way to provide a truly multidisciplinary approach to care.

This means involving all relevant medical specialists, including:

  • expert physiotherapists
  • dieticians
  • genetic counsellors

Psychosocial support is also crucial. Rare diseases often result in increased mental health issues.

Supporting clinical services

We are also cognisant of the need for multidisciplinarity to mean bridging the gap between medical and 'social' domains. Only 5% of rare disease have any dedicated treatment at all. We believe it is particularly important to take care of the 'everything else' to the best of our ability.

A key goal is therefore to help our clinical services provide a 360° approach to care. We aim to consider the things which matter most to patients, for instance:

  • having a specialist nurse or care coordinator to support them through diagnosis. And to help them navigate certain aspects of daily life
  • co-creating high-quality information resources to share outside the clinic. This will facilitate integration in areas such as education and employment

Our integration with The Newcastle upon Tyne Hospitals Trust is crucial here. We're advancing this mission in collaboration with the Newcastle Health Innovation Partners.


In the COVID era, we're looking at:

  • virtual approaches to care delivery
  • exploring cost-effective models for specialised care