News & Events

We are recruiting: Membership Engagement Manager

Last Reviewed 15/02/2019

By Emma Damian-Grint

Job title: Membership Engagement Manager
Responsible to: Director of Fundraising & Communications
Salary: £29,675 – £31,574 per annum dependent on experience
Benefits: 36 paid holiday days per year, plus employer contribution to pension
Contract: Full-time (35 hours a week), office based, permanent contract after successful completion of probationary period
Located: CAN Mezzanine, 49-51 East Road, London, N1 6AH

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, rare and undiagnosed conditions. We are a membership organisation made up of over 200 patient groups and we aim to upskill our members, bring knowledge and advice, and unify their voice around key policy issues that affect the patient community. We are experts in health policy and have a team of in-house academics who conduct psychosocial and economic research into the effects of living with genetic, rare and undiagnosed conditions. We also actively support research and innovation across the field of genetic medicine, and raise awareness within the wider public. We have two long-standing projects:

Rare Disease UK is a campaign and was established to push for the creation and implementation for the UK Strategy for Rare Diseases. Rare Disease UK is also the official organiser of the international health awareness campaign, Rare Disease Day, for the UK.

SWAN UK (syndromes without a name) is the only dedicated support network in the UK for families that have a child or young adult with an undiagnosed genetic condition.

About the role:

This is a fundamental and central role for Genetic Alliance UK and the post holder will work cross-departmentally on a range of exciting projects. The Membership Engagement Manager will lead and develop all membership activities for our organisation and expand the number of members we support in line with our 2018-2023 strategy. This will include organising year-round online and face to face learning opportunities, our Annual Conference, regularly meeting potential member organisations, speaking at member conferences, and processing renewals.

The post holder will also be involved in innovative engagement activities, and take a coordinating role for projects such as:

  • Priority Setting Partnership – a group of member organisations is working to identify the research priorities of patients and families affected by primary mitochondrial disease in order to influence the research agenda and raise awareness with researchers and funders.
  • Building Rare Communities – a project aimed at upskilling existing small organisations and creating new patient organisations where none have previously existed to support a patient cohort.
  • Talking about Gene Therapy – an engagement project aimed at empowering patient advocates to talk confidently about gene therapy and inform the wider community how they should talk about gene therapy to improve patient understanding of these technologies.

You will also play a significant role within the communications team which could include line management responsibilities, and delivering aspects of national health campaigns – Rare Disease Day and Undiagnosed Children’s Day.

Key responsibilities:

Membership Management

  • Receiving and processing membership applications in accordance with Genetic Alliance UK’s Memorandum & Articles.
  • Maintaining our membership database and leading the annual membership renewal process including processing and monitoring fees.
  • Making recommendations to the Board in relation to acceptance of membership applications and conversely removal of existing members.
  • Maintaining Genetic Alliance UK’s member information, updating profiles online as required and leading the development and delivery of the members’ area on the website.
  • Ensuring website internal records are up-to-date with respect to membership information.
  • Acting as the first point of contact for membership queries.

Membership Engagement and Development

  • Proactively engage with members throughout the lifecycle of their membership, cultivating strong relationships with members, understanding their needs and ensuring member views are a central part of strategy development and operational plans.
  • Leading the development and implementation of new initiatives for assessing and increasing membership satisfaction.
  • Actively seeking to expand the membership programme, contacting and building relationships with eligible organisations and presenting ‘member benefits’.
  • Developing and delivering a programme of membership engagement opportunities such as webinars, workshops, and information days, with the aim of ensuring our members have an opportunity to learn about and influence the issues Genetic Alliance UK works on and become more empowered supporting their patient community.
  • Supporting Genetic Alliance UK’s membership communications activity online and via social media.

Membership Events

  • Leading on the design and implementation of our Annual Conference, and bespoke engagement events, project managing all aspects including venue hire, setting the programme, speakers, catering, accessibility and risk assessment.
  • Compiling event budgets, closely monitoring income and expenditure and presenting financial updates when required.
  • Developing and editing high-quality information resources for use by members, patients and the public, including the optimisation of resources through our website.

Other responsibilities:

  • Working with fundraising colleagues to secure income for relevant projects and activities.
  • Keeping abreast of policy developments through regular contact with the Policy Team.
  • Recruiting and line management responsibility.
  • Coordinating of special projects e.g the Priority Setting Partnership, Talking about Gene Therapy and Building Rare Communities projects.
  • Playing an active role in the the  communication team

Person specification:

Education and qualifications

  • Graduate or equivalent experience.

Essential qualities, skills and experience

  • A minimum of two year’s demonstrable experience in an engagement role.
  • Experience of working with or for patient groups or communities.
  • Event organising experience, including budgeting, planning, managing bookings, administration, financial management and advertising.
  • Experience of project development, management and measuring impact of activities.   
  • Experience of recruitment and line management of paid staff or volunteers.
  • Excellent interpersonal skills.
  • Excellent communication skills, both written and oral.
  • Ability to work both as part of a team and independently.
  • A can-do attitude and strategic thinker that works with enthusiasm and creativity.
  • Excellent record keeping and administration skills.
  • A logical and organised approach to work.
  • Ability to meet agreed deadlines, prioritise workload and maximise the use of time.
  • Interest in healthcare, genetics and rare disease.
  • A commitment to the aims and objectives of Genetic Alliance UK.


  • A working or educational background in science and/or genetics.
  • An interest in design and web development.
  • Previous experience of creating surveys.

Additional requirements

  • To be able to work occasional evenings and weekends, and longer hours as required around national awareness campaigns Rare Disease Day and Undiagnosed Children’s Day.
  • Willing to undertake occasional travel in the UK.

The process:

To apply please send a covering letter explaining how you meet the requirements of the role and person specification, along with a CV. Please email these to

If you have any questions about the position or working for Genetic Alliance UK, you can contact Emma Damian-Grint, Director of Fundraising and Communications, on 0207 831 0883.

Applications close 09:00, Thursday 14 March 2019.

Interviews will be held at our offices on 20 March 2019. If shortlisted you will be asked to do a 10 minute presentation, followed by a 1 hour interview.

To start as soon as possible.

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