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Project Steering Group

The project steering group lead and manage the project:

  • Sue Farrington, Co-Chair of RAIRDA and Chief Executive Officer of Scleroderma and Raynaud’s UK (Project Sponsor)
  • Toto Gronlund, Independent Facilitator (Project Chair)
  • Dr Tony Lockett, Visiting Lecturer, King’s College London (Project Information Advisor)
  • Mark Minchin, Associate Director – Quality, National Institute for Health and Care Excellence
  • Steven Hardy, Head of Genomics and Rare Disease, National Disease Registration Service
  • Kim Jeong, Development Manager, Specialised Commissioning, NHS England
  • Claire Garrity, Patient Representative
  • Kimberley Stewart Beasley, Patient Representative
  • Dr Graham Shortland, Consultant Paediatrician, Cardiff (former Chair of the Wales Rare Diseases Implementation Group)
  • Ruth McGowan, Deputy Chair, Scottish Rare Disease Implementation Board and Consultant in Clinical Genetics
  • Dr Peter Lanyon, Consultant Rheumatologist, University of Nottingham
  • Sam Mountney, Policy and External Affairs Manager, Neurological Alliance
  • Professor AJ McKnight, Professor of Molecular Epidemiology and Public Health, Queen’s University Belfast
  • Zoe Morrison, Paediatric Clinical Nurse Specialist, SWAN clinic and Wales Rare Disease Implementation Group

Project Background

How the project started:

  • A group of interested parties from the Rare Diseases Forum came together and became the first IAG of the Forum in 2022.
  • After gathering expressions of support from across the academic and research
    community, we secured a meeting with NICE’s Chief Medical Officer in September
    2023, who agreed that a quality standard for rare disease would be worth pursuing.
  • Following this, in December 2023, a project group and steering group came together, to develop a set of quality statements for rare disease.

Objectives

Our goals:

We want to establish, through collaboration across the rare disease community, a set of statements which clearly set out what high-quality, sustainable care, treatment and management look like for rare diseases.

What will the results look like?

We will develop a clear set of statements, which will be used by relevant authorities (e.g. the National Institute for Health and Care Excellence – NICE), to drive improvements in rare disease care and treatment. These statements will be developed from the experiences and input of patients, carers, healthcare professionals, policymakers and patient organisations, to ensure that they best reflect the needs of the community, and the most effective solutions to some of the issues this community faces.

How can you support us?

Please keep in touch, and complete the next survey which will be released shortly.