Westminster Health Forum

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

TO BE PUBLISHED February 2022


Price: £95 PLUS VAT
Format: DOWNLOADABLE PDF


This conference will discuss the next steps for rare diseases policy in the UK.


Delegates will assess:


  • the Rare Diseases Framework -  priorities going forward if its ambitions are to be delivered, as well as progress during it first year
  • the impact of the pandemic
  • the role of genomics in improving diagnosis and care
  • the future for research, treatment access, and system preparedness

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:


  • the UK Rare Diseases Framework - taking the Framework forward, and priorities for driving improvement to diagnosis and care
  • implementing Genome UK - looking at what is required to harness 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
  • rare diseases across the health system - raising awareness, meeting new workforce needs, and developing expertise to support high-quality care

We are pleased to be able to include keynote sessions with: Professor Dame Sue Hill, Chief Scientific Officer for England and Senior Responsible Officer for Genomics, NHS England and NHS Improvement;


Dr Kath Bainbridge, Head of Genomic Science and Emerging Technologies, Department of Health and Social Care; and Dr Ellen Thomas, Clinical Director and Director of Quality, Genomics England.


The discussion is bringing together stakeholders with key policy officials who are due to attend from the MHRA; the OLS; DIT; and The Scottish Government.



This pack includes

  • Dropbox video recording of the conference
  • PDF transcript of the discussion, including all speaker remarks and Q&A
  • PDFs of speakers' slide material (subject to permission)
  • PDFs of the delegate pack, including speaker biographies and attendee list
  • PDFs of delegate articles