Help to map the UK rare disease research landscape!
Rare Disease Research UK (RDR UK) and LifeArc are working together on a project to create a view of the current rare disease research landscape in the UK – and we need your input!
The landscape is very complex and many people are not familiar with the roles, expertise and responsibilities of those involved. Through this project, we are aiming to create a resource available to anyone with an interest in rare disease research to help introduce the major UK-based organisations and programmes in the rare disease landscape and explain the roles they typically fulfil in the complex eco-system.
The resource will include
🗺️An interactive online tool allowing users to explore the rare disease- relevant organisational landscape in the UK
📘A written report of our findings
📂A directory of the roles, organisations and programmes that make up the landscape
If you’re involved in rare disease research, or you or a loved one have a rare condition, please complete our survey to help build this resource:
