Chief Executive Officer

Metabolic Support UK (MSUK)
Flexible location
Circa £65,000 per annum

Metabolic Support UK (MSUK) is an umbrella patient advocacy organisation founded in 1981, supporting people living with Inherited Metabolic Disorders (IMDs) and their caregivers. There are approximately 30,000 people in the UK today living with one of over 500 IMDs. These are rare, lifelong genetic disorders caused by an enzyme deficiency affecting the metabolic pathway which if undiagnosed or untreated, can cause irreversible complications, or sadly even death. Focusing specifically on the rarest of the IMDs, those which have no other patient organisation or support group, MSUK delivers a wide range of support and advocacy services to address unmet needs. Using qualitative and quantitative data generated via various methodologies, our small, dedicated team works to proactively identify priority needs and develop evidence-based outputs and programmes to ensure the maximum impact for individual patients, collective patient communities and the wider IMD community.

The Role

Our new Chief Executive will be essential in delivering against the strategy. You will build on the small existing team and unite people through a common vision. We are looking for a transformational leader who is collaborative, transparent and authentic, with a good understanding of small patient populations and their unique needs and challenges, and the drive to secure the future sustainability of the charity.

You may be operating as a CEO currently with a desire to lead an ambitious charity or you may be operating in a senior leadership role in a larger organisation looking to step into your first CEO role. Whatever your background, you will be passionate about the needs of people living with IMDs and will be committed to finding new, creative and impactful ways of working for us to provide the best possible support to those that need it most.


Download the candidate brief to find out about the role.