It will help ensure the
efficient use of scarce expertise, and the targeted use of health care resources to maximise the benefits for all patients and families affected by rare disease across the UK

Latest Partners

Action Duchenne

Arachnoiditis.co.uk

Association for Glycogen Storage Disease UK

British Paediatric Orphan Lung Diseases

HUM NAWA

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Governance

The Management Committee

Rare Disease UK is overseen by the management committee who meet monthly. The following people are members of the management committee:

  • Alastair Kent - Director of Genetic Alliance UK (RDUK Chair)
  • Steve Potter - Therapy Liaison Manager, Genzyme Therapeutics (RDUK Treasurer)
  • Becky Purvis - Policy and Public Affairs Manager - Association of Medical Research Charities (RDUK Secretary)
  • Dr Peter Corry - Paediatrician, Bradford
  • Julie-Ann Bridge - Chair of the Orphan Disease Industry Group
  • Marita Pohlschmidt - Head of Research, Muscular Dystrophy Campaign
  • Laura Gilbert - Freelance Research Consultant
  • Dr Stephen Jolles - Clinical Immunologist, University of Wales Hospital Cardiff (Advisor for Wales)
  • Marie McGill - National Lead, Single Gene Complex Need Project (SGCN), Western General Hospital, Edinburgh (Advisor for Scotland)
  • Dr Fiona Stewart - Consultant in Medical Genetics, Belfast City Hospital (Advisor for Northern Ireland)

Genetic Interest Group staff working on RDUK

  • Stephen Nutt -  RDUK Secretariat:
    Email: stephenraredisease.org.uk
  • Melissa Hillier - RDUK Communications:
    Email: melissararedisease.org.uk
  • Buddug Williams - RDUK in Wales:
    Email: williamsbgcardiff.ac.uk
  • Claire Cotterill - RDUK in Scotland:
    Email: clairegeneticalliance.org.uk

Constitution

A copy of the RDUK constitution can be downloaded here.

Funding

Rare Disease UK is funded by a subscription from pharmaceutical industry members. The amount paid by each company is £7,000 per annum.