Seeking an Interim Chief Executive

About Us

Genetic Disorders UK (GDUK) is a registered charity founded in 2011 with a vision to improve the lives of individuals and families affected by genetic disorders. 

There are currently more than 6,000 diagnosed genetic disorders affecting 1 in 25 children in the UK – this means 30,000 babies and children are newly diagnosed each year and more than half a million children and adults are living with a genetic disorder.

Our mission is to be the leading source of information and support for both those affected by a genetic disorder. 

We are proud of our website which contains extensive information across every topic relevant to affected individuals and families. We also provide the only free telephone and email helpline service in the UK for all genetic disorders. Professionally staffed by a genetic counsellor, the service is for people with a genetic disorder, their relatives and anyone who needs to know more about genetic disorders and how to cope with the difficulties they can present.

Our main fundraising event is the annual Jeans for Genes (J4G) Day campaign. A small team of passionate and dedicated professionals work hard every year to raise as much money as possible to fund much needed support services and increase the number of grants we provide to disorder-specific charities.

We founded the UK Genetic Disorders Partnership Network to collaborate with charities and patient groups, special schools, hospitals, hospices and service organisations who support and care for those affected by a genetic disorder, with membership now numbering nearly 90 organisations. We have also organised the UK Genetic Disorders Leadership Symposium – a two-day event in central London bringing together charities and patient groups to learn about the latest research, best practice and support information in the field of genetic disorders. 

Primary Immunodeficiency UK (PID UK) is also part of the GDUK family – set-up in 2013 in response to demand for an organisation supporting individuals and families affected by a primary immunodeficiency in the UK. Our aims are to help ensure that those affected by a primary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure their health needs are understood and addressed by those involved in policy and delivery of healthcare.

The Opportunity

The J4G campaign has been held annually in the UK for over 20 years (over which time it has raised in excess of £25m) and has been organised by GDUK for the last 8 years. Over this time, much has changed – fundraising methods, the genetic disorder charity landscape, public attitudes to charitable giving, impact of social media on marketing and engagement – to name but a few. 

GDUK is seeking an inspirational and experienced interim CEO to lead our organisation to the next era of growth and development in order to set-up the charity and the J4G campaign for even greater success in the future. This is an exciting time to join us, and a time of real opportunity to further raise our impact and make a bigger difference to those affected by genetic disorders.  

With a knowledgeable and committed team of staff and partners and an engaged and cohesive board in place, we are seeking a CEO who can assess new opportunities and lead us in securing a confident and creative future. We are looking for someone with a genuine interest in the impact our fundraising and service provision has on people’s lives. You’ll be a collaborative and intuitive leader with a deep personal commitment to the causes we serve, outstanding communication skills and a warm leadership style.

Role Purpose

  • Leadership, management and administration for GDUK, PIDUK and J4G ensuring effective governance and compliance with all legal requirements, including charity law.
  • Support the Board of Trustees to formulate a long-term strategy in line with GDUK’s mission and purpose. Ensure robust structures and systems are in place to deliver the agreed strategic priorities, enabling the organisation to thrive in fulfilling the objects of the charity as well as managing risk appropriately.
  • Have overall responsibility for the organisation’s staff team, maintaining a hardworking, efficient, dedicated, valued and happy workforce. The CEO is the custodian of the organisation’s values and has responsibility for developing the culture of the organisation as a well-respected partner and collaborator.

Key Responsibilities

  • Lead, motivate and support a team of staff and partners to perform at their best and deliver the charity’s purpose and mission in all operations.
  • Be accountable to the Board of Trustees for agreeing and delivering the strategy that guides the organisation in meeting its objectives, and in so doing to meet financial targets and deliver the agreed KPIs.
  • Lead and deliver the Jeans for Genes campaign and Leadership Symposium and any other high-profile events that may be developed as part of the overall strategy.
  • Be responsible for the overall financial health of the organisation, ensuring that appropriate budgets are prepared, approved, monitored and controlled and holding accountability for co-ordinating the fundraising work of the team.
  • Be the public face of GDUK, building relationships and partnerships to expand the reach of the charity and its diverse stakeholder groups.
  • Deliver the operations, communications, marketing and public affairs strategy, giving clarity to the team and partners regarding roles and direction.
  • Seek out, develop and maintain effective working relationships with all relevant organisations and individuals to promote the work of the charity, aligning with other key parties in the genetic disorders community to ensure the charity (and the wider sector) remains responsive to the needs of families and patient support groups.
  • Represent the charity in public forums by being a passionate and empathetic advocate for the charity and the wider genetic disorders community.
  • Work with the Board to ensure high standards of governance and policies and procedures in place are appropriate, effective and aligned with best practice.

Person Specification

  • A strong track record of leadership at a level commensurate with this role, ideally with experience of business and change management within a charity environment.
  • Substantial experience of working in genetics, healthcare or related sectors, alongside a passion for improving the lives of people impacted by health and medical issues.
  • Experience of working as part of a Board to set organisational strategy, with financial management experience including budgeting, tendering, fundraising and preparing funding applications.
  • Sound organisational and project management skills with the ability to translate strategic plans into performance.
  • Experience of inspiring and maintaining a positive, values-led working culture alongside strong organisational change skills. A natural collaborator with a clear and motivational leadership style that is appropriate for a smaller, close-knit team.  
  • Highly effective interpersonal, influencing and communication skills with the ability to gain the trust and confidence of stakeholders quickly, maintain positive and high value alliances, and tailor messages for different audiences.  
  • Diplomatic, articulate and confident manner that inspires trust and confidence and diffuses conflict.   
  • Sound judgement and cultural sensitivity; demonstrates emotional intelligence and is empathetic in approach to others.  
  • Creative thinker with an open-minded, entrepreneurial style and the drive, energy and resilience to see through change.

Terms of Appointment

Working pattern Part time 2-3 days per week (flexible and negotiable)
Initial contract term 6 months
Salary Up to £39k for 3 days per week (equivalent to £65k p.a. full-time).  Starting salary will be dependent on skills and experience and the agreed hours/days worked.
Pension 7% employer’s contribution
Annual leave 16 days p.a. for 3 days a week, plus public holidays (equivalent to 27 days p.a. full-time)
Location Home-based with travel to London as required
Hours 7 hours per day (equivalent to 35 hours per week full-time). The CEO may be required to work occasional evenings and weekends as required to perform the role effectively
Notice Negotiable
Equal Opportunities Statement Applications from individuals are encouraged regardless of age, disability, sex, gender reassignment, sexual orientation, pregnancy and maternity, race, religion or belief, marriage and civil partnerships.

How to Apply

This is a tremendous opportunity to use your skills and experience to drive the success of a critical charity playing an important role in the genetic disorders community at a time when medical advances in this field have never been more rapid.

If you have what it takes to move Genetic Disorders UK forward to a new level of performance and impact, we would love to hear from you. If you have any questions, please contact Jill Lucas, Chair of the Board of Trustees via

To make an application, please provide your CV and a cover letter outlining your interest and suitability by email to

The closing date for applications is 18th August 2019.  First interviews will be held virtually during week commencing 19th August, with flexibility to accommodate holidays as needed. Shortlisted candidates will be invited to a second interview in central London during early September.

Privacy Notice: Your privacy and the security of your data is a priority to GDUK. Please ask if you wish to know more how your data is collected and used.