Rare Diseases Advisory Group (RDAG)

The Rare Diseases Advisory Group (RDAG) makes recommendations to NHS England and the devolved administrations of NHS Scotland, NHS Wales and NHS Northern Ireland on developing and implementing the strategy for rare diseases and highly specialised services.

Highly specialised services are provided to a smaller number of patients compared to specialised services; usually no more than 500 patients per year. For this reason they are typically best delivered nationally through a very small number of centres of excellence. Examples of highly specialised services include liver transplant services, enzyme replacement therapy and proton beam therapy for specific cancer treatments.

RDAG makes recommendations to the Clinical Priorities Advisory Group (CPAG) about how highly specialised services should be commissioned. This includes recommending which expert centres should be nominated (or should no longer be nominated) to deliver highly specialised services.

A key focus for RDAG’s work is the delivery of NHS England’s commitments as set out in the UK Strategy for Rare Diseases, which was published in November 2013.

RDAG receives recommendations from Clinical Reference Groups (CRGs) set up by NHS England, and in addition, formulates its advice by calling on sources of sound evidence from outside the NHS, such as professional bodies and patient groups.

The membership of RDAG is broad and includes representatives from Royal Colleges, commissioners, patient and public voice representation and professionals such as a geneticist and an ethicist. There is also representation from the devolved administrations – NHS Scotland, NHS Wales and NHS Northern Ireland.

Membership

Chair: Mr Paul Streets OBE

The Chair of RDAG is Paul Streets, OBE who is currently Chief Executive of the Lloyds TSB Foundation for England and Wales, and Chair of the charity Contact a Family.

Previous to this, he was Director of Public and Patient Engagement and Experience at the Department of Health; Chief Executive of the Postgraduate Medical Education and Training Board; Deputy Chair of the Healthcare Commission, as well as Chief Executive of both the Health Development Agency and Diabetes UK.

Chair proposed by: NHS England Medical Director

Dr Michael Champion | Representative from the Royal College of Paediatrics and Child Health | Proposed by: Royal College President | Deputy: Vice President of Science and Research

Mrs Angela Douglas | Representative from the Royal College of Pathologists | Proposed by: Royal College President

Dr Andrew Goddard | Representative from the Royal College of Physicians | Proposed by: Royal College President | Deputy: Dr Robin Lachmann

Dr Peter Trigwell | Representative from the Royal College of Psychiatrists | Proposed by: Royal College President | Deputy: Dr Peter Aitken

Professor Nigel Standfield | Representatives from the Royal College of Surgeons | Proposed by: Royal College President | Deputy: Professor Derek Alderson

Dr Imran Rafi | Representative from the Royal College of General Practitioners | Proposed by: Royal College President | Deputy: Dr Janet Hall

Dr Annette Wood | Representative from Public Health England | Proposed by: Public Health England | Deputy: Dr Su Sethi

Dr Bronwyn Kerr | Geneticist | Proposed by: Joint Committee on Medical Genetics | Deputy: Professor Jill Clayton-Smith

Ms Elizabeth Porterfield | Policy, Scottish Government | Proposed by: Scottish Government

Fiona Murphy | National Services, NHS Scotland | Proposed by: NHS Scotland | Deputy: Dr Mike Winter

Dr Sian Lewis | Medical Director, Welsh Health Specialised Services | Proposed by: NHS Wales | Deputy: Stuart Davies

Karin Phillips | Deputy Director Major Health Conditions, Welsh Government | Proposed by: Welsh Government

Ms Teresa Magirr | Public Health Agency, Northern Ireland | Proposed by: Health and Social Care, Northern Ireland

Dr Joanne McClean | Public Health Agency, Northern Ireland | Proposed by: Health and Social Care, Northern Ireland

Ryan Wilson | Department of Health, Northern Ireland | Proposed by: Northern Irish Government

Colin Pavelin | Department of Health, England | Proposed by: English Government | Deputy: Paul Jeff

Justine Stalker-Booth | Regional Finance Director | Proposed by: NHS Director of Finance | Deputy: Andrew Gant

Dr Kieran Murphy | Regional Medical Director | Proposed by: NHS England Medical Director

Mr Andrew Bibby | Regional Director of Commissioning | Proposed by: NHS England Director of Commissioning

Mr Alastair Kent | Patient and Public Voice | Proposed by: Public Appointment Process from all UK

Ms Christine Collins | Patient and Public Voice | Proposed by: Public Appointment Process from all UK

Ms Susie Gear | Patient and Public Voice | Proposed by: Public Appointment Process from all UK

Mr Mark Styles | Patient and Public Voice | Proposed by: Public Appointment Process from all UK

Professor Ron Akehurst | Health Economist | Proposed by: Public Appointment Process

Mr Paul McManus | Pharmacist | Proposed by: NHS England Lead Pharmacist | Deputy: Mr William Horsley

Professor Ruud Ter Meulen | Ethicist | Proposed by: Institute of Medical Ethics | Deputy: tbc

Ms Sheela Upadhyaya | National Institute for Health and Care Excellence | Deputy: NICE nominee

Ex officio

Andy Leary | Finance Director, Specialised Commissioning (National)

Alastair Kent | Chair of the DH Rare Disease Policy Group | Deputy: Vice Chair of the DH Rare Disease policy Group

Mr James Palmer | Clinical Director, NHS England Specialised Services

Teresa Fenech | Nursing Director (National), Specialised Commissioning

Will Huxter | Regional Director of Specialised Commissioning

Andrew Bibby | Associate Director, Specialised Commissioning

Dr Vaughan Lewis | Regional Clinical Director of Specialised Commissioning

Terms of reference