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 (document is available on our archived website), 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 Alastair Kent OBE

Alastair Kent was executive director of Genetic Alliance UK, the alliance of over 200 patient support organisations for those with rare and genetic disorders for almost 25 years. In April 2017 he stepped back from this role to become an ambassador for the organisation. He retired from this role at the end of April 2018.

In 2011 Alastair was made OBE for services to health care, and in 2017 he was elected Fellow of the Royal Society of Arts and nominated healthcare advocate of the year at the Communique awards. In 2018 he received a Lifetime Achievement Award from Eurordis, the European rare diseases umbrella body.

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 | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Larissa Kerecuk

Mrs Angela Douglas | Representative from the Royal College of Pathologists | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Christine Waterman/Alison Taylor-Beadling

Dr Robin Lachmann | Representative from the Royal College of Physicians | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Andrew Goddard

Dr Peter Trigwell | Representative from the Royal College of Psychiatrists | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Peter Aitken

Professor Nigel Standfield | Representatives from the Royal College of Surgeons | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Professor Derek Alderson

Dr Imran Rafi | Representative from the Royal College of General Practitioners | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning

Dr Annette Wood | Representative from Public Health England | Proposed by: Public Health England | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Su Sethi

Dr Helen Firth | Geneticist | Proposed by: Joint Committee on Medical Genetics | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Professor Jill Clayton-Smith

Ms Elizabeth Porterfield | Policy, Scottish Government | Appointment confirmed by: Director of Specialised Commissioning | Proposed by: Scottish Government

Fiona Murphy | National Services, NHS Scotland | Proposed by: NHS Scotland | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Mike Winter

Emma Coles | Deputy Chief Medical Officer, Welsh Government | Proposed by: Welsh Government | Appointment confirmed by: Director of Specialised Commissioning

Prof Iolo Doull | Welsh Health Specialised Services | Proposed by: Welsh Health | Appointment confirmed by: Director of Specialised Commissioning

Ms Teresa Magirr/Dr Joanne McClean | Medical Director, NHS Northern Ireland | Proposed by: NHS Northern Ireland | Appointment confirmed by: Director of Specialised Commissioning

Ryan Wilson | Department of Health, Northern Ireland | Proposed by: Northern Irish Government | Appointment confirmed by: Director of Specialised Commissioning

Monika Preuss | Department of Health, England | Proposed by: UK Government | Appointment confirmed by: Director of Specialised Commissioning Dr Bettina Mavrommatis | Deputy

Mr Mark Styles/Ms Sue Millman/Ms Rosalind Jacobs/Mr Rob Graham | Patient and Public Voice | Proposed by: Public Appointment Process from all UK | Appointment confirmed by: Director of Specialised Commissioning

Professor Ron Akehurst | Health Economist | Proposed by: Public Appointment Process | Appointment confirmed by: Director of Specialised Commissioning

Vacant Role | Ethicist | Proposed by: Institute of Medical Ethics | Appointment confirmed by: Director of Specialised Commissioning | Deputy: tbc

Ms Sheela Upadhyaya | National Institute for Health and Care Excellence | Appointment confirmed by: Director of Specialised Commissioning

Ex officio

Dr Vaughan Lewis | Regional Clinical Director, Specialised Commissioning | Proposed by: Clinical Director Specialised Services; ex officio | Appointment confirmed by: Director of Specialised Commissioning

Joanne Murfitt | Regional Director of Specialised Commissioning | Proposed by: Operational Delivery Director (National), Specialised Commissioning; ex officio | Appointment confirmed by: Director of Specialised Commissioning

Mr Andrew Bibby | Associate Director, Specialised Commissioning | Proposed by: Operational Delivery Director (National), Specialised Commissioning; ex officio | Appointment confirmed by: Director of Specialised Commissioning

Mr Paul McManus | Pharmacist | Proposed by: NHS England Lead Pharmacist; ex officio | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Mr William Horsley

Cathy Edwards | Operational Delivery Director (National), Specialised Commissioning | Appointment confirmed by: Director of Specialised Commissioning

Jonathan Powell | 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

Terms of reference