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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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Jobs at Rare Disease UK

Internship Description

Role: Public Affairs Intern

Supported by: Public Affairs Officer

Based at: Unit 4D, Leroy House, 436 Essex Road, London N1 3QP

Preferred term: up to 21hrs a week for up to 12 weeks

Remuneration: Lunch and travel and expenses (between Zones 1-6)

Genetic Alliance UK 

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 180 patient organisations. Our aim is to ensure that high quality services, information and support are provided to all who need them. We actively support research and innovation across the field of genetic medicine.

Rare Disease UK

Rare Disease UK (RDUK), an initiative of Genetic Alliance UK, is the national alliance for people with rare diseases and all who support them. It is a stakeholder coalition brought together to work with Government to develop and oversee the implementation of a UK Strategy for Rare Diseases.

Effective implementation of the UK Strategy for Rare Diseases will ensure that people living with a rare disease have access to the best care and treatment that health and social services can provide. The UK Strategy is the first time since the establishment of the NHS that patients and families with rare diseases have a clear and strong commitment from Government to meet their needs. The document is signed by all four health ministers of the UK with support from across the political spectrum.

There's been much progress since the publication of the UK Strategy for Rare Diseases - the Implementation Plans for Scotland, Wales and Northern Ireland have been published as well as the Statement of Intent from NHS England. However, there is a risk that all 51 commitments in the UK Strategy for Rare Diseases will not be implemented and with a General Election fast approaching, it is important that we do not lose traction.

Collectively rare diseases are not rare. 1 in 17 people will be affected by a rare disease at some point in their life; approximately 3.5 million people in the UK. 75% of rare diseases affect children and 30% of rare disease patients will die before their 5th birthday. 

What this internship offers

Our aim for this internship is to offer an exciting opportunity for an enthusiastic individual to learn skills and gain demonstrable experience in public affairs. The intern will have the opportunity to contribute ideas on how we can improve and enhance our public affairs activities, helping us to develop and deliver them into effective initiatives. 

What the internship will involve

The Public Affairs Intern will work directly with the Public Affairs Officer to lobby parliamentarians to ensure the effective implementation of the UK Strategy for Rare Diseases in all four nations of the UK. 

One project that our intern will have the opportunity to get involved with is our Pledge Card Campaign which will target MPs and prospective parliamentary candidates. The aim of the campaign is to raise awareness of rare, genetic and undiagnosed conditions, to build relationships with key stakeholders, and to ensure a commitment to the UK Strategy for Rare Diseases.  

The Public Affairs Intern will also have the opportunity to attend and play a key role in our annual parliamentary Rare Disease Day receptions that will take place across Britain at the end of February. 

What we like our interns to have:

  • A degree or equivalent experience.
  • A can-do attitude.
  • Good research, communication skills and IT literacy.
  • An organised approach to work with attention to detail.
  • An enthusiasm for working as part of a team as well as using their own initiative. 
  • Commitment to the aims and objectives of Genetic Alliance UK and Rare Disease UK. 

Application details

Deadline for applications: 9th February 2015 

Interview date: 12th February 2015 

To start: as soon as possible

Please email a cover letter and your CV to: Farhana Ali,