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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK

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Living with Lowes

HLRCC Family Alliance

LAM Action

Living Beyond a Diagnosis

Cystinosis Foundation UK

MLD Foundation

CDKL5 UK

Ben's Friends

Kirsty's Cause

Bone Cancer Research Trust

PVNH Support & Awareness

PID UK

 

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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)

  • Dr Peter Corry - Paediatrician, Bradford

  • Laura Gilbert - Freelance Research Consultant

  • Dr Stephen Jolles - Clinical Immunologist, University of Wales Hospital Cardiff 

  • Richard Lynn - Scientific Coordinator, British Paediatric Surveillance Unit

  • Marie McGill - National Lead, Single Gene Complex Need Project (SGCN)

  • Barbara McLaughlan - Head of External Affairs, Novartis Pharmaceuticals 

  • Dr Liz Philpots - Head of Research, Association of Medical Research Charities

  • Patti Simonson - Head of Social Work and Welfare Benefits Administration, Royal Hospital for Neuro-disability

  • Nick Sireau Chairman and CEO, AKU Society

  • Val Stevenson - External Affairs, Genzyme Therapeutics

  • Dr Fiona Stewart - Consultant in Medical Genetics, Belfast City Hospital

  • Alison Wilson - All Ireland Advocacy Support Officer, Society for Mucopolysaccharide Diseases

Observers

  • Mark Barrett - Freelance consultant

  • Jamie Holyer - Managing Director, Advocate Policy and Public Affairs Consulting Ltd

  • Steve Potter 

  • Becky Purvis - Head of Public Affairs, The Royal Society 

Genetic Alliance UK staff working on RDUK

  • Farhana Ali (full-time) - Secretariat: Email: 
  • Nick Meade - Manager: Email:
  • Melissa Hillier (on maternity leave) - ManagerEmail:   
  • Emma Hughes (part-time) - RDUK in Wales: Email
  • Natalie Frankish (part-time) - RDUK in Scotland: Email:

Report of Activity 

The latest RDUK Report of Activity January 2013 - December 2013 can be downloaded here 

The RDUK Report of Activity July 2011 - Decemeber 2012 can be downloaded here

The RDUK Report of Activity July 2010 - June 2011 can be downloaded here

The RDUK Report of Activity July 2009 - June 2010 can be downloaded here

Minutes of AGM

The minutes of RDUK's 2014 Annual General Meeting can be downloaded here 

The minutes of RDUK's 2013 Annual General Meeting can be downloaded here

The minutes of RDUK's 2011 Annual General Meeting can be downloaded here

The minutes of RDUK's 2010 Annual General Meeting can be downloaded here

Funding

Rare Disease UK is supported by unrestricted grants in the form of membership fees from our industry members - a list of these companies are available on our Member's Page

Rare Disease UK is an initiative of Genetic Alliance UK a charity registered in England and Wales (no. 1114195) and in Scotland (no. SC039299). A company Limited by Guarantee (Number 05772999) Genetic Alliance UK's Annual Report and Accounts can be viewed here.

Ethical Collaboration Policy 

View the RDUK ethical collaboration policy here