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Governance and funding

Rare Disease UK

Rare Disease UK (RDUK) is a campaign run by 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.

Anyone with an interest in rare diseases can support the RDUK campaign; it’s free for everyone apart from industry.

RDUK is supported by restricted grants in the form of membership fees from our industry supporters. A list of all these companies is available on our industry supporters' page. This means that all other stakeholders with an interest in rare diseases can support RDUK for free; 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 supporters. Members are elected for a three-year term; you can view a list of our Management Committee members below.

We hold an Annual General Meeting every year where we present our yearly 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, Public Affairs Manager: Farhana@raredisease.org.uk

 

The Management Committee

Rare Disease UK is overseen by a Management Committee which meets four times a year. The following people, who were elected in January 2016 for three years, are members of the Management Committee:

  • Alastair Kent – Director of Genetic Alliance UK (RDUK Chair)
  • Alison Wilson – All Ireland Advocacy Support Officer, Society for Mucopolysaccharide Diseases (currently on maternity leave)
  • Charlotte McClymont – Rare Disease Programme Manager, National Congenital Anomaly and Rare Disease Registration Service, Public Health England
  • Dr Fiona Stewart – Consultant in Medical Genetics, Belfast City Hospital
  • Fabiola Martin – Senior Lecturer in HIV Medicine, University of York
  • Geoffrey Carroll – Policy professional 
  • Jane Swainson – Patient representative 
  • Larissa Kerecuk – Rare Disease Lead for Birmingham Children's Hospital
  • Lucy Pratt – Patient representative 
  • Richard Lynn – Scientific Coordinator, British Paediatric Surveillance Unit
  • Val Stevenson – External Affairs, Genzyme Therapeutics

 

Funding 

Rare Disease UK is supported by restricted grants in the form of membership fees from our industry supporters – a list of these companies is available on our industry supporter's page.

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