Westminster Health Forum

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

Morning, Monday, 31st January 2022


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

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



Keynote Speakers

Dr Ellen Thomas

Clinical Director and Director of Quality, Genomics England

Professor Kate Tatton-Brown

Clinical Lead, Genomics Education Programme, Health Education England; and Consultant Clinical Geneticist, St George’s University Hospitals NHS Foundation Trust

Keynote Speakers

Dr Kath Bainbridge

Head of Genomic Science and Emerging Technologies, Department of Health and Social Care

Dr Emma Baple

Rare Disease Lead, NHS South West Genomic Laboratory Hub; and Clinical Senior Lecturer in Genomic Medicine, University of Exeter

Professor Dame Sue Hill

Chief Scientific Officer for England and Senior Responsible Officer for Genomics, NHS England and NHS Improvement

Dr Ellen Thomas

Clinical Director and Director of Quality, Genomics England

Professor Kate Tatton-Brown

Clinical Lead, Genomics Education Programme, Health Education England; and Consultant Clinical Geneticist, St George’s University Hospitals NHS Foundation Trust

Speakers

Dr Imran Kausar

Vice President and General Manager UK, Novartis Gene Therapies

Alastair Kent

Independent Patient Advocacy Consultant; Co-Chair, UK Rare Disease Policy Board; and Member, Rare Disease Advisory Group, NHS England

Nick Meade

Joint Interim Chief Executive and Director of Policy, Genetic Alliance UK

Dr Boyd Ghosh

Consultant Neurologist, University Hospital Southampton NHS Foundation Trust; and Trustee, PSP Association

Annabel Griffiths

Head of Rare Diseases, Costello Medical

Dr William Evans

GP, Leeds; Member, Genomics England GP Committee; Academic, University of Nottingham; and Clinical Lead, Mendelian

Professor Timothy Barrett

Leonard Parsons Professor of Paediatrics, University of Birmingham; and Honorary Consultant in Paediatric Endocrinology and Diabetes, Birmingham Women’s and Children’s Hospital