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Newcastle University
Centre for Rare Disease


Newcastle University
Centre for Rare Disease

A Newcastle University Centre of Research Excellence

Newcastle has a long and distinguished history of research and clinical care in rare diseases.

Collaborating for patient-centred innovation

Newcastle's stellar track record in rare disease research has been enabled by decades of collaboration between the University and Newcastle Upon Tyne Hospitals NHS Foundation Trust (NUTH). It's built upon an ethos of robust patient partnerships.

We've launched the Newcastle University Centre for Rare Disease to:

  • consolidate this expertise under a single entity
  • continue to strengthen our internal and external collaborations for the years ahead
Centre for Rare Disease logo

Why a Newcastle Centre for Rare Disease?

✅ Newcastle houses world-leading expertise. We're leading in discovery, diagnostics, treatment and care of many diseases/groups of disorders.

✅ We have a long tradition of translating outstanding underpinning science into novel therapies and integrated care approaches. These are evaluated and then implemented into practice via cutting-edge clinical services.

✅ Newcastle offers unparalleled networking expertise. We played a key role in the launch of the European Reference Networks (ERNs). We established and coordinated three of the 24 ERNs, dedicated to immunodeficiency, auto-inflammatory and autoimmune diseases; liver diseases; and neuromuscular diseases. That's more than any other centre in Europe. Post 2020, our experts retain these unique insights into building and evolving diverse networks in care and research.

✅ Newcastle experts play a unique role on the international rare disease stage. They actively shape and put in place policies to govern diagnostics, treatment, care, research and holistic support for rare diseases on the European and global levels.

Our centre:

  • involves more than 80 experts, many leaders in their fields, from the University and NUTH. Over half our experts have a contract with the Trust, enabling them to deliver meaningful patient-focused research and translate our science from bench to bedside and back again.
  • unites researchers with a combined funding track record of more than £120 million for rare disease research over the past decade
  • unites individuals with knowledge and understanding of particular conditions or disease areas and those with expertise in disciplines applicable to rare disease research
  • embraces an ethos of multidisciplinarity and inclusivity
  • targets all career stages, Faculties and NUTH departments
  • integrating with numerous research themes

The Centre is essential to improve therapy options, outcomes, and quality of life for people with rare diseases.

Testing in one of our labs.

Our research goals

  1. Consolidate and continue to enhance multidisciplinary teams necessary for world-leading discovery research in rare diseases.
  2. Embrace innovative methodologies, approaches and translational expertise. Evolve research into clinical applications of tomorrow.
  3. Continue to lead in policy generation and implementation. Enhance not only research but impact on all aspects of health and wellbeing. Contribute to greater quality of life for patients and stronger societal benefits.
  4. Sustain and foster new collaborations with patient organisations, policymakers - at national, European, and global levels - regulators, industry, and others, to shape and seize new funding opportunities.
  5. Increase proportion of high-quality outputs with real-world impact.
  6. Optimise teaching, education, and outreach around RD at Newcastle. Foster a pipeline of independent researchers able to increase research power in future and develop new external collaborations.
An experiment.

Contact us

If you are based in Newcastle and would like to express your interest in joining this initiative – or indeed are interested in collaborating with us externally - please email co-lead Victoria Hedley​.

NUCoRE Steering Committee:

  • Dave Jones (Lead)
  • Victoria Hedley
  • Volker Straub
  • Joris Veltman
  • Sophie Hambleton
  • Michael Wright
  • Simon Woods