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 and NHS Improvement National Director of Specialised Commissioning

Dr Larissa Kerecuk | Representative from the Royal College of Paediatrics and Child Health | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: TBC

Professor Simon Heales | Representative from the Royal College of Pathologists |Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Christine Waterman

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

Dr Mayur Bondani | Representative from the Royal College of Psychiatrists | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Niall Campbell

Mr Stephen Dover | Representatives from the Royal College of Surgeons | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: TBC

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

Dr Robert Wilson |Specialised Commissioning Public Health Network | Proposed by: Public Health Network | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Su Sethi

Professor Diana Baralle | Geneticist | Proposed by: Joint Committee on Genomics in Medicine | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Helen Firth

Sarah Ogilvie | Scottish Government | Appointment confirmed by: Director of Specialised Commissioning | Proposed by: Scottish Government

Dr Craig Wheelans | National Services Divisions, NHS Scotland | Proposed by: NHS Scotland | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Susan Buchanan

Caroline Lewis | Welsh Government | Proposed by: Welsh Government | Appointment confirmed by: Director of Specialised Commissioning

Professor Iolo Doull | Welsh Health Specialised Services | Proposed by: Welsh Health | Appointment confirmed by: Director of Specialised Commissioning | Dr Jennifer Thomas

Teresa Magirr/Lynn Keenan | NHS Northern Ireland | Proposed by: NHS Northern Ireland | Appointment confirmed by: Director of Specialised Commissioning

Alison McMillan | Northern Ireland Government | Proposed by: Northern Irish Government | Appointment confirmed by: Director of Specialised Commissioning

Kath Bainbridge | Department of Health and Social Care (DHSC), England | Proposed by: UK Government | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Rosie Fox/Emily Staricoff

Louise Fish/Sophie Thomas/Rosalind Jacobs/Lindsay Weaver | 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 | Deputy: TBC

Dr Nicola Stingelin | Ethicist | Proposed by: Institute of Medical Ethics | Appointment confirmed by: Director of Specialised Commissioning | Deputy: TBC

Jasdeep Hayre/Richard Diaz | National Institute for Health and Care Excellence | Appointment confirmed by: Director of Specialised Commissioning

Xianne Aguiar |Nurse representative from Highly Specialised Services| Proposed by: Director of Specialised Commissioning| Appointment confirmed by: Director of Specialised Commissioning

Dr Indi Banerjee| Doctor representative from Highly Specialised Services| Proposed by: Director of Specialised Commissioning| Appointment confirmed by: Director of Specialised Commissioning

Marie-Claire  Hoyle| Nurse representative from Highly Specialised Services| Proposed by: Director of Specialised Commissioning| Appointment confirmed by: Director of Specialised Commissioning

Mr Martin Sneed | Doctor representative from Highly Specialised Services| Proposed by: Director of Specialised Commissioning| Appointment confirmed by: Director of Specialised Commissioning

Ex officio

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

Professor Simon Barton | Regional Director of Specialised Commissioning, NHS England | Proposed by: Operational Delivery Director (National), Specialised Commissioning; ex officio | Appointment confirmed by: Director of Specialised Commissioning

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

Cathy Edwards | Clinical Programmes Director Specialised Commissioning, NHS England | Specialised Commissioning | Appointment confirmed by: Director of Specialised Commissioning

Alastair Kent | Chair of the Department of Health and Social Care (DHSC) UK Rare Disease Forum | Deputy: Vice Chair of the DHSC Rare Disease Forum

Professor James Palmer | National Medical Director Specialised Services, NHS England

Sue Sawyer | Quality and Nursing, NHS England and NHS Improvement| Specialised Commissioning | Appointment confirmed by: Director of Specialised Commissioning