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 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