About us
Bringing together the UK’s strengths and expertise in rare disease research
A rare disease is one which affects 1 in 2,000 people
RDRUK has been established to connect and enhance the UK’s strengths in rare disease research. A rare disease is one which affects 1 in 2,000 people or fewer but with over 7,000 rare diseases known, collectively they will affect 1 in 17 people during their lifetime, which in the UK amounts to over 3.5 million people. Rare diseases include disease of both genetic and non-genetic origins and affect both adults and children.
The platform will foster greater collaboration between academic, clinical and industry researchers, patients, research charities and other key organisations in rare disease research to accelerate the understanding, diagnosis and treatment of rare diseases. 75% of rare diseases affect children and more than 30% of children with a rare disease die before their fifth birthday and so research that will enable innovations in diagnosis and treatment is vital.
The RDR UK 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.
The RDR UK Nodes
The Platform is made up of eleven research groups, known as “nodes”.
The eleven nodes are all led out of universities across the UK and each node is delivering multiple research projects that are either focused on one group of rare conditions or on a cross-cutting topic. Whilst the nodes are based at universities, they are also working with charities, industry and other universities to ensure that they are reaching the right people for the research.
Patient and Public Involvement and Engagement
Patient and public involvement and engagement (PPIE) encompasses both involving people with relevant lived experience as partners and advisors in research, and engaging wider audiences with scientific progress.
To help researchers establish good involvement practices we have collected a shortlist of resources. These resources are from established UK organisations and have been selected to provide variety in terms of the target audience, the scope of the resource and the format.
Platform Advisory Group (PAG)
The independent Platform Advisory Group includes suitable representation of stakeholders, agreed with the funders. The group meets twice annually and will act as a “critical friend” to provide unbiased advice and support to the Platform, and insights into other sectors’ thoughts in the rare disease research landscape. The is a forum to discuss and address challenges and barriers, and identify opportunities within the broad rare disease research landscape.
Contact us
To get in touch please complete the contact form or email the Hub team at the address below.
General enquiries
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