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 RDRUK 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.
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.
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
