Our Nodes

The Hub

The Hub will provide cohesion for the platform and support platform collaborators in bringing a meaningful impact to the rare disease community. It will connect all the funded nodes and provide a well signposted route into the platform for external collaborators, including patients, researchers, industry and international partners.

As the co-ordinating centre for the Platform, the Hub will:

  • Raise the profile of RDR UK and increase its visibility, ensuring that the activities of the platform and nodes are promoted widely to rare disease patients and their families and carers, the scientific community and members of the public.
  • Build links and opportunities for collaboration with other key organisations and initiatives in the rare disease research space.
  • Bring members of the platform and others together by hosting a series of meetings, conferences and seminars to take place at various locations in the UK.
  • Support platform members in delivering Patient and Public Involvement and Engagement (PPIE) through sharing best practice, providing training, offering guidance and promoting the work of the platform to patients through organisations and charities supporting patients with rare diseases.

Meet the Hub Team

Lead

Prof Dave Jones

Newcastle University

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Co-lead

Victoria Hedley

Newcastle University

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PPIE Lead

Dr Amy Hunter

Genetic Alliance UK

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Director of Innovation, NuTH

Prof Neil Watson

Newcastle upon Tyne NHS Foundation Trust

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Senior Project Manger

Anna Halstead

Newcastle University

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Assistant Project Manger

Nikita Binu

Newcastle University

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Contact us

To get in touch please complete the contact form or email the Hub team at the address below.

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General enquiries

hub@rd-research.org.uk

Join Our Community

Network enquiries

Email:
enquiries@rd-research.org.uk

Telephone: 01793 416200

Industry enquiries

Email:
enquiries@rd-research.org.uk

Telephone: 01793 416200

Academic enquiries

Email:
enquiries@rd-research.org.uk

Telephone: 01793 416200

Prof Dave Jones

Professor Jones is Professor of Liver Immunology at Newcastle University and PI for the UK-PBC Research Consortium. He leads the internationally renowned autoimmune liver disease clinical service in Newcastle, hosted by the Newcastle upon Tyne Hospitals Foundation Trust (NUTH). He has worked in the area of the autoimmune liver disease Primary Biliary Cholangitis (PBC) for over 25 years, starting as an MRC Clinical Research and Clinician Scientist Fellow. Working initially on the underpinning biology of the disease he has translated key mechanistic discoveries into new approaches to therapy. The UK-PBC MRC Stratified Medicine programme, which he led, has revolutionised thinking in the disease, defining the unmet need, developing the clinical tools needed to quantify risk and identifying the patient groups who need enhanced therapy in PBC. He has led the evaluation, approval and implementation programmes for the first stratified therapy in PBC (and indeed any rare liver disease), Obeticholic Acid, which is now available across the NHS. He was also the Coordinator for the RARE-LIVER European Reference Network (ERN) which was established to support the development of clinical delivery programmes for rare liver disease (PBC is a rare disease) across Europe. 

In addition to his clinical and research work he as a long interest in training and is the NIHR Dean for Faculty Trainees. He has played a key role in the development of new integrated academic pathways which will play a key role in developing the next generation of researchers in the area of Stratified Medicine and its underpinning technologies. 

He is an NIHR Senior Investigator and in June 2018 was awarded an OBE for his services to Liver Medicine and Clinical Academic Training. 

Dave leads the co-ordinating Hub for Rare Disease Research UK, which provides cohesion and support to the platform and its collaborators in bringing a meaningful impact to the rare disease community. 

Victoria Hedley

Victoria is a Rare Disease Policy Manager at Newcastle University and a co-lead and founder of the Newcastle Centre for Rare Disease. She has played an active role in the generation of rare disease (RD) policies and policy-related outputs for over a decade, especially in the European ecosystem: she worked closely with the European Commission under two European Joint Actions, to support the conception, implementation and evolution of 24 European Reference Networks; she led the knowledge-based activities of the Rare 2030 foresight project; and she contributed to the development of disease-agnostic EU-level recommendations on topics such as National Plans and Strategies, the Incorporation of RD into Social Services and Policies, and Patient Registration and data collection. She established and currently coordinates the RD-IMAG (UK-International Mirror & Action Group for RD Research) and is a co-lead for the new Rare Disease Research UK Hub. Victoria received the EURORDIS European Rare Disease Leadership Award in 2021. 

Dr Amy Hunter

Dr Amy Hunter is the Director of Research at Genetic Alliance UK. Her role is to ensure that they are active in relevant research that shines a light on the experiences of people affected by genetic and rare conditions. She works closely with the policy team to ensure that they identify policy implications that arise from their research. Genetic Alliance UK carries out in-house studies and collaborates with university researchers and clinicians, and facilitates patient involvement with academic research. Her role with RDRUK is to support the Hub and promote good practice in patient and public involvement and engagement.

Prof Neil Watson

Professor Watson is the Director of Innovation at The Newcastle upon Tyne Hospitals NHS Foundation Trust, a post that he moved in to in October 2024, following many years of developing innovative practice in healthcare. Prior to this new role, he was the Director Pharmacy in Newcastle. During the COVID pandemic he led the Covid Vaccination Programme for the North east and North Cumbria, facing the challenges of Health and Healthcare inequality on a daily basis, yet finding innovative solutions to tackle these disparities. His primary areas of interest are Advanced Therapies, Genomics, Integrated Care, Population Health, and Clinical Informatics, supporting data driven care. 

Professor Watson has been Co-Director of Northern Alliance Advanced Therapies Treatment Centre since 2018, supporting the creation of optimal adoption pathways for advanced therapies into the NHS and is a member of Rare Disease Research UK Hub team, bringing his NHS and advanced therapies experience to that important platform. 

Anna Halstead

Anna is a Senior Project Manager at Newcastle University, managing the Rare Disease Research UK Hub. She works with the Hub team to coordinate RDR UK’s activities, driving collaboration across the platform and beyond. She has several years’ experience in project management in various fields, including in medical research, and prior to joining the RDRUK Hub, she managed the NIHR-funded Newcastle In-vitro Diagnostic Co-operative. Before being taken in the direction of project management, Anna studied languages and has a BA in Spanish, Portuguese and Latin American Studies. 

Nikita Binu

Nikita is an Assistant Project Manager at Newcastle University and a member of the RDR UK Hub team. She leads on communications and promotion for the RDR UK Platform, including managing its social media presence.

Prior to joining the Hub team, she completed an MRes in Drug Delivery and Nanomedicine at Newcastle University. She has a background in nanoparticle-based drug delivery systems, with a focus on cancer therapeutics.