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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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Rare Disease UK Governance & Funding

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.

Genetic Alliance UK's accounts are independently audited and lodged with The Charity Commission annually. These show that, in addition to seeking funding from private sector sources, Genetic Alliance UK is funded by its member organisations, charitable foundations such as the Wellcome Trust and public sector bodies including the Medical Research Council, the European Commission, the Big Lottery and others. This diversity ensures that Genetic Alliance UK is independent of any sectoral interest.

Genetic Alliance UK meets the strict governance rules set out by The Charity Commission more information can be found via The Charity Commission website here.

Rare Disease UK

Membership of Rare Disease UK (RDUK) is open to anyone who has an interest in rare diseases. Individuals as well as organisations are welcome to join and membership is free to everyone apart from industry.

RDUK is supported by restricted grants in the form of membership fees from our industry members and a list of all these companies is available on our member's page. This funds the project and allows membership for all other stakeholders to be free-of-charge, it does not determine or influence the work we carry out.

Transparency: Governance

Rare Disease UK is managed by Genetic Alliance UK and monitored by a dedicated Rare Disease UK management committee. The management committee helps to steer and oversees the work of RDUK and is representative of RDUK's membership. Members are elected for a three-year term, you can view a list of our management committee members here.

We hold an Annual General Meeting every year where we present our year activity and accounts; this is open to all RDUK members and hard copies are available for all attendees.

Transparency: Finance

Details of RDUK’s income and expenditure can be found in our activity reports here and as part of Genetic Alliance UK's Accounts here.

Independence & Integrity

We work with all stakeholders in the rare disease community to benefit patients and families affected by rare conditions. We are politically neutral and independent of commercial interests; any collaborative work we carry must abide by Genetic Alliance UK’s Ethical Collaboration Policy.

If you have any questions regarding RDUK's funding, finance and governance please contact Farhana Ali, Executive Officer:

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

  • 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