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Prospectus is delighted to be partnering with our client to recruit their next Chief Executive Officer.

The orgnisation is the UK's leading charity dedicated to improving the lives of people affected by Dravet Syndrome, a rare, severe and life-limiting neurological condition. Founded by parents in 2008, the charity has grown significantly and now supports hundreds of families across the UK through family support services, professional education, awareness raising and medical research.

As the charity enters its next phase of development, the organisation is seeking an ambitious and inspirational CEO to lead the organisation through its next stage of growth and impact.

Reporting to the Board of Trustees, you will provide strategic and operational leadership across the organisation, leading the delivery of the charity's future strategy while ensuring excellence in day-to-day operations. You will work closely with families, clinicians, researchers, industry partners, funders and policymakers, acting as a visible and credible ambassador for the charity across the sector.

This opportunity is ideally suited to a senior leader from a national charity or patient advocacy organisation who has successfully led organisational growth and transformation. You will bring experience of scaling services, income and organisational capacity, while retaining a strong understanding of hands-on leadership within a growing charity.

We are looking for a confident and influential leader with the presence and credibility to inspire supporters, stakeholders and partners, whether speaking at conferences, fundraising events or representing the charity nationally. Experience within a rare disease, neurological condition, disability, health or patient advocacy organisation would be highly advantageous, with direct rare disease experience particularly welcomed.

To be successful, you will bring:

• Significant senior leadership experience within a national charity, health or patient advocacy organisation.
• A proven track record of leading organisational growth and managing complexity through periods of change.
• Strong strategic and operational leadership skills, with the ability to balance long-term vision and day-to-day delivery.
• Outstanding relationship-building and stakeholder management capabilities.
• The confidence and presence to act as an engaging external ambassador and public spokesperson.
• A commitment to improving outcomes for individuals and families affected by complex health conditions.

This is a rare opportunity to lead a highly respected charity at an exciting time of progress and opportunity, including significant advances in rare disease research and treatment.
This role is home-based with regular UK travel and occasional international travel. Some evening and weekend work will be required.

At Prospectus we invest in your journey as a candidate and are committed to supporting you with your application. We welcome all candidates to apply, regardless of age, sex/gender, disability, race, religion, sexual orientation, marital status or pregnancy/maternity. If you have any disability and require reasonable adjustment/s to any part of the process, then please contact Catherine Bunting at Prospectus.

Recruitment timeline:
First round interviews (via Zoom) - Friday 18th September
Final round interviews (London) - Monday 28th September