Accelerating R&D for rare disease in the UK: An opportunity to change millions of lives
This report is a call to transform the UK’s rare disease future. It outlines how we can smooth the rare disease research and development pathway in the UK, and ultimately speed up diagnoses and get treatments to patients faster.
It is for policymakers, academics, clinicians, patient groups and those working in industry.
You can access a condensed version of the report below or read the full-length version by filling in your details.
More about this report and the Taskforce
LifeArc assembled a Taskforce of stakeholders from across the UK rare disease and life sciences landscape.
The cross-sectoral group included innovators, advocates, regulators, payers, investors, and policymakers. They defined key areas for consideration to build on previous work mapping the rare disease R&D landscape.
The aim is to help harmonise and streamline the rare disease R&D ecosystem, create an attractive environment for investment, and ultimately drive progress for people with rare diseases.
In this report, we draw on the Taskforce’s deliberations and insights to outline key challenges and, crucially, recommendations to overcome them.
Our recommendations are grouped under three themes: 1) diagnosis and data, 2) market access and 3) support for innovators, with some cross-cutting enablers to support them.
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