London, Greater London
£30,000 - £35,000 per year
Contract, Part-time, Temporary, 8 months, Full-time
Job description


Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do.

We advocate for fast and accurate diagnosis, good quality care and access to the best treatments.  We actively support progress in research and engage with decision-makers and the public about the challenges faced by our community.

Policy work is at the heart of Genetic Alliance UK’s activity: all our work either begins or ends with a policy issue. The team works on a wide range of topics to ensure that the voice of our member groups and people living with rare and genetic conditions is heard by decision-makers.



The Public Affairs Manager is a key member of the policy team and will drive the public affairs activities of Genetic Alliance UK. You will provide the secretariat to the All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions, organising meetings, maintaining a close relationship with parliamentarians, writing briefings and drafting speeches ahead of meetings. You will oversee the contacting of parliamentarians and the management and maintenance of accurate records. You will ensure a close synergy between the Cross Party Groups in Scotland and Wales – with a special focus in Wales.

A key policy area you will be focused on will be the implementation of the UK Rare Diseases Framework. As part of this, you will provide the secretariat to Rare Disease UK’s Patient Empowerment Group.

You will play a leading role in campaigning on topical issues affecting the rare disease community throughout the UK, including Newborn Screening, access to rare disease medicines, pre-election campaigns in Northern Ireland, and the annual awareness-raising campaign: Rare Disease Day.



  • Providing the secretariat for the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions. In particular, maintaining a close relationship with the Chair and Vice-Chairs of the group.
  • Coordinating activities with Cross-Party Groups in Scotland and Wales.
  • Attending and participating in weekly policy team meetings.
  • Leading public affairs campaigns and working with the communications team to deliver Rare Disease Day.
  • Collaborating on the dissemination of Genetic Alliance UK’s public affairs and campaigning work with the communications team.
  • –      Providing the secretariat to the Rare Disease UK Patient Empowerment Group.
  • Developing and maintaining relationships with civil servants, parliamentarians, Genetic Alliance UK members, Rare Disease UK supporters and other key stakeholders.
  • Supporting the Policy and Public Affairs Officer.
  • Undertaking other reasonable tasks required by Genetic Alliance UK when needed.

Personal Specification Education and qualifications

  • Graduate or equivalent experience.
  • Good level of IT literacy.

Essential qualities, skills and experience:

  • Excellent communication skills, both written and oral.
  • Experience of working in a government relations, policy or public affairs environment.
  • Excellent interpersonal, influencing and negotiating skills.
  • Proven ability to write clear and logical documents, with strong attention to detail.
  • Effective in managing a range of projects simultaneously.
  • Experience of organising meetings and events.
  • Ability to work both as part of a team and independently.
  • A can-do attitude, with enthusiasm and creativity.
  • A logical and organised approach to work.
  • Ability to meet agreed deadlines, prioritise workload and maximise the use of time.
  • An ability to adapt writing style for a range of audiences.
  • A commitment to the aims and objectives of Genetic Alliance UK.

Desirable qualities, skills and experience

  • Experience of health or medical research public affairs work.
  • Experience of public affairs work  in the devolved nations.
  • Experience of the voluntary sector.
  • Appreciation of current issues in genetics and healthcare.

Additional requirements

  • To be able to work occasional evenings and weekends.
  • Willing to undertake occasional travel in the UK and Europe.
More about Genetic Alliance UK
Genetic Alliance UK

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our mem... Read more

Refreshed on: 31 July 2021
Closed date: 12 August 2021
Tags: Campaigning, Policy/Research

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