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Priorities for rare disease research, diagnosis, and care in the UK

Event details

This conference will discuss the next steps for rare diseases policy in the UK, looking at priorities going forward for the Rare Diseases Framework, the role of genomics in improving diagnosis and care, and the future for research, treatment access, and system preparedness.

Taking place following the publication of the Rare Diseases Framework earlier this year, delegates will discuss the first year of its delivery, the impact of the pandemic, and the key priorities for delivering ambitions within the framework over the next year.

It will also be an opportunity to look at the impact of policy developments within the life sciences and health research landscape, as well as the opportunities these developments present for improving rare disease outcomes, including the Genome UK Implementation Plan, the Life Sciences Vision, the Future of UK Clinical Research Delivery, and the new Innovative Medicines Fund.

Key areas for discussion include:

  • taking forward the UK Rare Diseases Framework and priorities for improving diagnosis and care
  • the implementation of Genome UK and harnessing genomics to improve the understanding, detection, and treatment of rare genetic conditions
  • developing the UK’s research ecosystem, improving access to new and innovative medicine and treatment, and the potential for global leadership in this field
  • raising awareness of rare diseases across the health system, meeting new workforce needs, and developing expertise to support high-quality care.


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