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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

• Salary: £33,643 FTE (Outside of London); £35,577 FTE (London based)
• 35 hours per week
• Permanent 
• Location: The role will be part of a team that works across the UK. You can be home-based anywhere in UK, with travel for meetings. You can also choose to work from our Bristol or London offices.

Change lives in a life-changing career

When a child or young person is diagnosed with cancer, their whole world can feel like it’s falling apart. Independence is taken and confidence is stolen. Stability no longer exists. The future suddenly feels uncertain.

The impact of cancer on young lives is more than medical. And that impact can be felt by entire family. That’s why we exist. Our specialist social workers help children and young people with cancer and their families navigate the emotional and practical impact of cancer.

We remove barriers, solve problems and prioritise wellbeing. And we stop at nothing to make their voices heard and their unique needs understood, so they can get the right care and support at the right time

About the role

Young Lives vs Cancer has a growing and ambitious commitment to improving the systems that shape the experiences of children and young people with cancer and their families. Our North Star vision and Time Is Now Strategy set out ambitious goals for the difference we want to make, both for the children and young people and loved ones we support and the wider systems around them.

This role sits within the Strategic Insight team, which supports Young Lives vs Cancer to use relevant, timely and accurate information to inform decision-making across the organisation.

As a Data Analyst (Impact Focus), you will work as part of the Strategic Insight team while dedicating a significant proportion of your time to supporting the Innovation, Policy & Systems Change Directorate, particularly the Research, Learning & Systems Change team. You will play a key role in helping Young Lives vs Cancer generate stronger evidence of the needs, experiences and outcomes of children and young people with cancer and their families, and ensure that evidence is used to improve services, shape strategy and influence decision-making. 

We're looking for someone with strong analytical, SQL and data visualisation skills who is curious about data and passionate about turning it into meaningful insight. You will support survey and evaluation activity, develop dashboards and reporting tools, improve access to data and insight, and provide data and insight that supports evidence-informed decisions across the organisation. 

Working closely with the Impact, Evaluation & Learning Lead, Strategic Insight colleagues and teams across the charity, you will help strengthen the quality, accessibility and use of data and insight. Through your work, you'll contribute to a better understanding of the difference Young Lives vs Cancer makes for children, young people and families, while helping to build the evidence base needed to improve outcomes and influence the wider systems that support them.

This is a hands-on role for someone who enjoys combining data analysis, problem-solving and communication to create actionable insight and drive meaningful change. 

This role is subject to a criminal record check. In the event of a successful application a basic criminal record check will be completed. A previous conviction is not necessarily a barrier to employment. We encourage qualified applicants to apply, and we will consider each case individually.

What will I be doing?

No two days are the same at Young Lives vs Cancer. So, summarising your ‘day to day’ isn’t easy. Here are some of the main things you’ll be doing, but you’ll find more details in the job description.

• Act as the primary analytical resource for the Innovation, Policy & Systems Change Directorate, working closely with them to prioritise and deliver analytical and insight requirements while working as part of the Strategic Insights team to support on BAU and cross organisational tasks where needed. 
• Analyse and bring together data from multiple sources to understand service reach, outcomes, impact, trends and equity of access for children and young people with cancer and their families. 
• Turn quantitative, qualitative, and operational data into clear, actionable insight that support decision-making, evaluation, impact measurement, and organisational learning. 
• Develop and maintain Power BI dashboards, reports and visualisations that improve the flow and accessibility of data and insight within the Innovation, Policy & Systems Change Directorate and across the organisation. 
• Create and manage organisational insight resources, while improving how data, evidence and learning are connected, structured, and shared across the charity. 
• Improve the quality, consistency, and reliability of data by supporting data governance processes, identifying issues, identifying evidence gaps, and promoting standardised ways of working. 
• Work collaboratively with colleagues across the organisation to strengthen data literacy, improve access to evidence, and support funding bids, impact reporting and other organisational priorities. 

What do I need? 

Diverse perspectives and unique skillsets are at the heart of Young Lives vs Cancer. If you're passionate about making a positive impact and eager to learn, we encourage you to apply, even if you don't meet the criteria and person specification fully. Your potential is what matters most to us, and we’re committed to fostering an inclusive and supportive work environment to help you develop.

The key skills we’re looking for in this role are:

• A genuine interest in using data and insight to improve outcomes for children and young people with cancer and their families, with a curious and analytical mindset. 
• Experience analysing and interpreting data to identify patterns, generate insight and support decision-making. 
• Good SQL skills, with experience extracting, querying and working with data from databases. 
• Experience creating dashboards, reports or data visualisations, ideally using Power BI or similar tools. 
• The ability to bring together information from multiple data sources to build understanding, tell a clear story and support organisational learning. 
• Good written and verbal communication skills, with the ability to explain data and findings clearly to a range of audiences and work collaboratively across the organisation. 
• An organised and proactive approach, with a willingness to learn, develop new skills, contribute to good data management practices, and work in line with Young Lives vs Cancer's values: Curious, Creative, Collaborative, Changemaking and Courageous. 

What will I gain?

 For people to reach their full potential, they need the right environment. As a member of Team Young Lives, you’ll be made to feel supported, valued and appreciated. Here’s how we do it:

• Flexible working: we’re open to working hours outside of 9 - 5 and we can talk through your flexibility requirements at interview stage
• Wellbeing, Thinking & Growth Days: four days a year to to step back from the day-to-day and focus on your own learning and development
• Generous annual leave allowance
• Great family/caring leave entitlements
• Enhanced pension
• Access to our employee savings scheme