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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

Community Fundraiser – East Midlands

Are you ready to take on a new challenge with a leading charity making a real difference in brain tumour research?

Brain Tumour Research is an exciting, innovative, and ambitious charity. We are passionate about finding a cure for brain tumours through the establishment of dedicated Brain Tumour Research Centres of Excellence around the UK.

After a successful 2025, we’re building on our momentum and looking ahead with ambition. As our work continues to expand, so does our impact. We are now looking for passionate people to join us on the next stage of our journey!

It is a fantastic time to be joining us and we are keen to share this with likeminded and talented individuals. We currently have an opening for a Community Fundraiser – East Midlands, to join our Income Generation and Development team.

• Do you want to make a difference in one of the most innovative and exciting medical research fundraising charities in the UK?
• Are you able to provide friendly and professional support to fundraisers and supporters?   
• Do you have experience in supporting events or community activities?
• Do you live in our East Midlands region (Derbyshire, Leicestershire, Lincolnshire, Nottinghamshire or Rutland)?

Have you answered Yes to these questions?

Does this sound like the opportunity to really take the next step in your career?

Excited to learn more about this position? Then please take a read through our recruitment pack attached below. 

If you have the skills and ambition that we are looking for we are excited to receive your application.  We are really looking forward to welcoming a new member to our team!

We are asking for a CV as the first step but applicants may be asked to provide a targeted covering letter as part of the selection process.  Interviews will be conducted during the application window as appropriate, and will consist of a first interview via MS Teams, progressing, if successful to a face to face second interview, held at our offices in Milton Keynes.

We reserve the right to close the application window early and advise candidates to apply in good time to avoid disappointment.

Closing Date: 06th September 2026

We are looking for people who share our passion for finding a cure for brain tumours and who have the skills and experience to make a difference. We welcome applications from candidates of all backgrounds, cultures, genders, sexual orientations, abilities, and ages. We believe that diversity enriches our organisation and helps us achieve our mission. We are committed to providing an inclusive and supportive environment where everyone can be themselves and contribute to our vision.

Community Fundraising Assistant – East

Are you ready to take on a new challenge with a leading charity making a real difference in brain tumour research?

Brain Tumour Research is an exciting, innovative, and ambitious charity. We are passionate about finding a cure for brain tumours through the establishment of dedicated Brain Tumour Research Centres of Excellence around the UK.

After a successful 2025, we’re building on our momentum and looking ahead with ambition. As our work continues to expand, so does our impact. We are now looking for passionate people to join us on the next stage of our journey!

It is a fantastic time to be joining us and we are keen to share this with likeminded and talented individuals. We currently have an opening for a Community Fundraising Assistant - East, to join our Income Generation and Development team.

• Do you want to make a difference in one of the most innovative and exciting medical research fundraising charities in the UK?
• Are you able to provide friendly and professional support to fundraisers and supporters?   
• Do you have experience in supporting events or community activities?
• Do you live in our East Region (which includes Bedfordshire, Buckinghamshire, Northamptonshire, Hertfordshire, Cambridgeshire, Norfolk, Suffolk, London, Kent, Surrey, Sussex, Essex)?

Have you answered Yes to these questions?

Does this sound like the opportunity to really take the next step in your career?

Excited to learn more about this position? Then please take a read through our recruitment pack below. 

If you have the skills and ambition that we are looking for we are excited to receive your application.  We are really looking forward to welcoming a new member to our team!

We are asking for a CV as the first step but applicants may be asked to provide a targeted covering letter as part of the selection process.  Interviews will be conducted during the application window as appropriate, and will consist of a first interview via MS Teams, progressing, if successful to a face to face second interview, held at our offices in Milton Keynes.

We reserve the right to close the application window early and advise candidates to apply in good time to avoid disappointment.

Closing Date: 30th August 2026 

We are looking for people who share our passion for finding a cure for brain tumours and who have the skills and experience to make a difference. We welcome applications from candidates of all backgrounds, cultures, genders, sexual orientations, abilities, and ages. We believe that diversity enriches our organisation and helps us achieve our mission. We are committed to providing an inclusive and supportive environment where everyone can be themselves and contribute to our vision.

Job Purpose

Sequence ME & Long Covid is one of the most ambitious whole-genome sequencing studies ever undertaken into ME and Long Covid, co-led by Action for ME. Building on the success of DecodeME, this proposed £20 million study will use large-scale, long-read whole-genome sequencing to analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid - making it the world's largest 'long-read' whole-genome sequencing study of any disease.

Current funding supports project mobilisation, partnership development, and the development of the Long Covid arm of the study, including agreeing case definitions and gathering expressions of interest from people with Long Covid. Phase 2 has recently been confirmed, backed by £4.75m from the UK government and a further £174,414 from the WE&ME Foundation, and will focus on sequencing 6,000 ME/CFS samples previously collected through DecodeME using Oxford Nanopore's long-read sequencing technology, running alongside Phase 1.

You will play a pivotal role supporting the Sequence ME & Long Covid project in several different ways. Working closely with the project's management team and other team members, you will help ensure the smooth day-to-day running of this landmark study, providing administrative support to the various people and partners involved in delivering it.

As a self-starter, you will manage a range of tasks including meeting scheduling, taking meeting minutes, preparing governance documents, event administration, and broader project support - no two days will be the same.

You will need to maintain a high level of confidentiality at all times, particularly when supporting governance meetings and handling sensitive project documentation.

As a team player, you will provide comprehensive, confidential and organised administrative support, developing a deep understanding of the project and building strong, effective working relationships with colleagues, researchers and external partners.

Remote working at home can be challenging for some and works incredibly well for others. You will need to be able to work independently, use your own initiative, and remain proactive in maintaining good levels of communication with colleagues.

Key Duties

• Help monitor inboxes and respond to routine project enquiries in a timely and sensitive manner, escalating more complex matters as appropriate
• Assist the project's management team and other team members with meeting scheduling and diary coordination
• Take accurate minutes at project, management and other project-related meetings, and follow up and track resulting actions to completion
• Prepare, format and proof-read governance documents and papers
• Maintain and update project databases including the Teams channel, ensuring documents are saved correctly, other management information/recording systems to ensure accurate and timely record-keeping. Help with the tracking of expressions of interest from potential study participants.
• Provide administrative support for project events - from planning and logistics through to on-the-day support
• Help prepare presentations, slide decks and briefing materials for internal meetings, funders, partners and participant-facing communications
• Support the drafting, formatting and coordination of project communications, such as updates for partners, funders or the wider ME and Long Covid community
• Support coordination between internal teams and external partners, including research and funding partners
• Maintain project files and documentation in line with agreed communication operating procedures with internal and external partners ensuring information is well organised, up to date and easy for the team to access
• Maintain confidentiality at all times and in line with relevant policies and procedures, ensuring compliance with GDPR and that all data consent processes have been followed in relation to data protection
• Positively promote the work of the Sequence ME & Long Covid project and Action for ME at all times
• Undertake any other reasonable activity in line with the responsibilities of the post, as requested by the CEO, Business Development & Partnerships Manager, Senior Research Manager or the project's Management Team

Person Specification

Essential skills and experience

• Organisational skills - Highly organised with the ability to manage multiple tasks across a fast-moving research project, with attention to detail and accuracy maintained under pressure
• Communication - Excellent verbal and written communication skills, with the ability to interact effectively with diverse audiences including researchers, funders and people affected by ME and Long Covid
• IT literacy - Proficient with common office software, including Microsoft Office (Word, Excel, Outlook, Teams, PowerPoint), and able to quickly learn relevant project management, database or communications systems as needed
• Problem-solving - A creative and solution-focused mindset to address challenges and find innovative ways to improve processes
• Adaptability - Capable of managing changing priorities, working flexibly, and adapting to the needs of a fast-paced, ambitious research programme
• Initiative - A proactive approach, with the ability to work independently and take initiative, while also following clear instructions when given
• Teamwork - A collaborative team player with a proven ability to work effectively as part of a team, including a remote-working team spanning multiple partners and stakeholders
• Interest in the sector - A genuine interest in health research, the Third Sector, and a desire to take action to improve the lives of people with ME and Long Covid
• Experience - Demonstrable ability to be an effective administrator, ideally within a charity, research, or project environment. Experience supporting governance processes, events, or communications would be an advantage but is not essential

Desirable skills and experience

• Experience providing administrative support for scientific or research-related projects
• Experience writing and communicating with non-specialist or general audiences

Please note, the salary of £24,642.09 FTE per year pro rata is based on a 35-hour week.