Our Impact and Achievements
How we have made a positive impact on the rare disease community
Our National Impact
Our Centre has a strong national record in securing large collaborative grants and managing or coordinating significant rare disease projects and infrastructure. These include, but are not limited to:
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LifeArc Centre for Acceleration of Rare Disease Trials (ARDT). This project is coordinated by Newcastle, with work packages led by partners at Birmingham and Belfast Queen’s Universities.
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Newcastle also leads the national coordination hub and two nodes within the Rare Disease Research UK network.
- We work closely with Newcastle Biomedical Research Centre (BRC) to advance research in specific conditions within our BRC themes and leverage the potential of our expertise and rich National Institute for Health Research (NIHR) infrastructure. This includes a Patient and Public Involvement and Engagement (PPIE) strategy group to oversee engagement and impact in our local communities.
Our International Impact
International collaborations are also an important pillar of our work:
- Newcastle played a key role in conceptualising the European Reference Networks (ERNs). In addition to participating in the ERNs for pulmonary, bone, and renal diseases, our Centre established and led three ERNs:
- rare liver diseases
- rare neuromuscular diseases
- rare immunological, autoinflammatory and autoimmune diseases.
- We remain a dedicated partner in the European Rare Diseases Research Alliance (ERDERA).
- Led by Newcastle, the UK was one of the first National Mirror Groups (NMG) piloted through the European Joint Programme for Rare Diseases Research.
- Newcastle is now a co-lead within the (inter)national alignment workstream in ERDERA and are working to establish National Mirror Group (NMG)s in each of the 37 countries participating in ERDERA, to strengthen rare disease research and policy alignment within each country.
Our successful collaboration with the European Reference Network (ERN) shows the quality of our rare disease clinical services and research. We are especialy proud to have led more ERNs than any Centre anywhere in Europe.
Our Funding
Our Centre has secured at least £250 million of rare disease research funding over the past decade. We recieve funding from a wide range of sources and stakeholders; recent data suggests our researchers sucessfully secured at least 365 funding awards from 255 unique funding sources, and we continue to submit ambitious proposals to ensure future sustainability and growth.
