UK Rare Disease Policy Board and Forum

Revised governance arrangements

In October 2016 revised governance arrangements were introduced for the UK Strategy for Rare Diseases.

These changes reflected the need to make the UK Rare Disease Forum more manageable within the constraints of reduced Department of Health structure. The changes also focus on UK-wide policy development and meeting the 51 commitments in the UK Strategy.

The UK Rare Disease Policy Board has been established to fulfil this role. The Board held its first meeting on 5 October 2016.

Role of the UK Rare Disease Policy Board

The UK Rare Disease Policy Board is a UK-wide body with responsibility to facilitate the co-ordination of policy development and meeting the commitments set out in the UK Strategy for Rare Diseases.

As well as supporting policy development and implementation, the Board will consider how the strategy could be improved by harnessing the outputs from across the broader genomics and rare diseases landscape.

The policy board will work collaboratively with the UK Rare Disease Forum on all aspects of its work, this includes progress reports for UK health ministers, which are due in February 2018 and February 2020.

Task and finish groups

Under revised governance arrangements, the UK Rare Diseases Policy Board has the scope to commission task and finish groups to manage projects which support 1 or more of the 51 commitments in the UK Rare Diseases Strategy. Read the Policy Board operating principles (PDF, 79.7KB, 1 page) for further details.

Membership of the UK Rare Disease Policy Board

Alastair Kent (Co-chair) Genetic Alliance UK
Dr Gina Radford (Co-chair) DCMO, Department of Health
Monika Preuss Department of Health
Angela Simpson Scottish Government
Fiona Murphy NHS National Services Scotland
Caroline Lewis Welsh Government
Robert Orford Welsh Government
Ryan Wilson Northern Ireland Government
Fiona Marley NHS England
Ellen Graham NHS England
Sian Lewis NHS Wales
Pushpinder Mangat NHS Wales
Richard Scott Genomics England Ltd.
Sarah Stevens Public Health England
Sheela Upadhyaya NICE
Patient representative Kerry Leeson-Beevers, Alström Syndrome UK
Patient representative Beverly Searle, Unique

Minutes

Read the minutes of the UK Rare Disease Policy Board and the UK Rare Disease Forum.

Terms of reference

Read the UK Rare Disease Policy Board: Terms of reference (PDF, 92KB, 3 pages) .

Role of the UK Rare Disease Forum

The UK Rare Disease Forum, with extended stakeholder membership, will continue to make sure that the full breadth of rare diseases are covered, including those diseases or conditions with a non-genetic basis.

The Forum’s primary aim is to provide comprehensive stakeholder insight and advice on the main issues, challenges and risks to meet the 51 commitments in the UK Strategy.

The UK Rare Disease Forum: Operational model (PDF, 181KB, 5 pages) is available.

Contact details

ukstrategyforrarediseases@dh.gsi.gov.uk