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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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You are here: Home / Governance

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)
  • Becky Purvis - Policy and Public Affairs Manager - Association of Medical Research Charities 
  • Dr Peter Corry - Paediatrician, Bradford
  • Mark Barrett - Chair of the Orphan Disease Industry Group
  • Laura Gilbert - Freelance Research Consultant
  • Dr Stephen Jolles - Clinical Immunologist, University of Wales Hospital Cardiff 
  • Marie McGill - National Lead, Single Gene Complex Need Project (SGCN) 
  • Dr Fiona Stewart - Consultant in Medical Genetics, Belfast City Hospital 
  • Alison Wilson - All Ireland Advocacy Support Officer, Society for Mucopolysaccharide Diseases
  • Patti Simonson - Head of Social Work and Welfare Benefits Administration, Royal Hospital for Neuro-disability
  • Val Stevenson - External Affairs, Genzyme Therapeutics
  • Richard Lynn - Scientific Coordinator, British Paediatric Surveillance Unit
  • Nick Sireau Chairman and CEO, AKU Society

Observers

  • Jamie Holyer - Managing Director, Advocate Policy and Public Affairs Consulting Ltd
  • Steve Potter - Represents the Orphan Diseases Industry Group Partnership 

Genetic Alliance UK staff working on RDUK

  • Farhana Ali (full-time) - Secretariat: Email: 
  • Melissa Hillier (part-time) - Manager: Email:   
  • Devinder Degun (part-time)- Research Officer: Email:
  • Emma Hughes (part-time) - RDUK in Wales: Email: 
  • Natalie Frankish (part-time) - RDUK in Scotland: Email:

Constitution

A copy of the RDUK constitution can be downloaded here.

Report of Activity 

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

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

Minutes of AGM

The minute for RDUK's 2013 for Annual General Meeting will be available soon... 

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

Funding

RDUK is funded by an unrestricted educational grant from its pharmaceutical industry members a list of these members can be found on our Members Page

 

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Rare Disease UK is supported by an unrestricted educational grant from its its industry members - a list of these companies are available on our members page

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