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: Louise Fish

Louise Fish has over 25 years of executive and non-executive board experience of health and social care in the charitable, commercial and public sectors.

Louise was formerly Chief Executive of Genetic Alliance UK, an alliance of over 200 organisations representing people with rare and genetic conditions. Prior to this she was Chief Executive at the Tuberous Sclerosis Association, one of Genetic Alliance UK’s members.

Before moving to the charitable sector, Louise worked as a communications consultant advising a range of organisations across the health and social care systems including charities, healthcare professional bodies, regulators and pharmaceutical companies.

Earlier in her career Louise worked in-house as Director of Communications and Engagement at the NHS Confederation, and Director of Communications at the National Institute for Health and Care Excellence.

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
• TBC | Representative from the Royal College of Psychiatrists | Proposed by: Royal College President | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Dr Niall Campbell
• Mr Bhavin Visavadia | 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
• Victoria Keir | 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: Steph Croker/Cornelius Self
• Jilian Hastings-Ward/Janet Mather/Paddy Storrie/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
• 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 Snead | Doctor representative from Highly Specialised Services| Proposed by: Director of Specialised Commissioning| Appointment confirmed by: Director of Specialised Commissioning
• Juliette Buttimore |Nurse 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
• Mr Simon Kendall | Regional Director of Specialised Commissioning, NHS England
• Paul McManus | Pharmacist | Proposed by: NHS England Lead Pharmacist; ex officio | Appointment confirmed by: Director of Specialised Commissioning | Deputy: Mr William Horsley
• Matt Day | Director of Clinical Commissioning, NHS England | Specialised Commissioning | Appointment confirmed by: Director of Specialised Commissioning
• TBC | 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| Specialised Commissioning | Appointment confirmed by: Director of Specialised Commissioning