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 selected via UK-wide public appointments process:

• Dr Caroline Platt | Representative from the Royal College of Paediatrics and Child Health | Nominated Royal College of Paediatrics and Child  | Deputy: Dr Peter Davis
• Professor Simon Heales | Representative from the Royal College of Pathologists |Nominated by Royal College of Pathologists | Deputy: Dr Christine Waterman
• Dr Robin Lachmann | Representative from the Royal College of Physicians | Nominated by Royal College of Physicians | Deputy: Dr Peter Bellfield
• TBC | Representative from the Royal College of Psychiatrists | Nominated by Royal College of Psychiatrists| Deputy: TBC
• Mr Keith Allison | Representatives from the Royal College of Surgeons | Nominated by Royal College of Surgeons | Deputy: TBC
• Dr Imran Rafi | Representative from the Royal College of General Practitioners | Nominated by Royal College of General Practitioners
• Dr Robert Wilson |Specialised Commissioning Public Health Network | Proposed by: Public Health Network | Appointment confirmed by: National Medical Director Specialised Commissioning | Deputy: Dr Su Sethi
• Dr Mohnish Suri | Geneticist | Nominated by Joint Committee in Medical Genetics | Deputy: Dr Helen Firth
• Dr Craig Wheelans | National Services Divisions, NHS Scotland | Nominated by NHS Scotland | Deputy: Susan Buchanan
• Professor Iolo Doull | Welsh Health Specialised Services | Nominated by NHS Wales
• Teresa Magirr/Lynn Keenan | NHS Northern Ireland | Nominated by NHS Northern Ireland
• Kath Bainbridge | Department of Health and Social Care (DHSC), England | Proposed by: UK Government | Appointment confirmed by: National Medical Director Specialised Commissioning | Deputy: Steph Croker
  Antonia Osolos
• Jillian Hastings-Ward/Janet Mather/Paddy Storrie/Lindsay Weaver | Patient and Public Voice | Selected via a UK-wide public appointments process
• Professor Graham Cookson | Health Economist | Appointment nominated by National Medical Director, Specialised Commissioning
• Dr Nicola Stingelin | Ethicist | Proposed by: Institute of Medical Ethics | Appointment confirmed by: National Medical Director Director of Specialised Commissioning | Deputy: TBC
• Professor Dave Jones/Rare Disease Research UK/Nominated by Rare Disease Research UK
• Professor Emma Baple/Rare and Inherited Disease Genomic Centre of Excellence/Nominated by Rare and Inherited Disease Genomic Centre of Excellence
• Richard Diaz/Christian Griffiths | National Institute for Health and Care Excellence | Appointment confirmed by: National Medical  Director of Specialised Commissioning
• Dr Indi Banerjee | Doctor representative from Highly Specialised Services| Nominated by National Medical Director Specialised Commissioning
• Marie-Claire Hoyle | Nurse representative from Highly Specialised Services| Nominated by National Medical Director Specialised Commissioning
• Professor Martin Snead | Doctor representative from Highly Specialised Services| Nominated by National Medical Director Specialised Commissioning
• Juliette Buttimore |Nurse representative from Highly Specialised Services| Nominated by National Medical Director Specialised Commissioning

Ex officio

• Professor Simon Barton | Regional Medical Director of Specialised Commissioning, NHS England
• Mr Simon Kendall | Regional Medical Director of Specialised Commissioning, NHS England
• Dr Fawad Hussain | Regional Medical Director of Specialised Commissioning, NHS England
• Paul McManus | Pharmacist | Proposed by: NHS England Lead Pharmacist | Deputy: Mr William Horsley
• Matt Day | Director of Clinical Commissioning, NHS England | Specialised Commissioning
• Professor James Palmer | National Medical Director Specialised Services, NHS England
• Sue Sawyer | Quality and Nursing, NHS England | Specialised Commissioning