Upload your CV
Save time when you spot your dream job. Upload your CV with ease.
Save time when you spot your dream job. Upload your CV with ease.
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:
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
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
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.
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.
To find a cure for all types of brain tumours To increase the UK investment in brain tumour research
The client requests no contact from agencies or media sales.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
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.
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.
To find a cure for all types of brain tumours To increase the UK investment in brain tumour research
The client requests no contact from agencies or media sales.
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
Person Specification
Essential skills and experience
Desirable skills and experience
Our mission is to improve the lives of people affected by ME. Better meeting their needs today while taking action to secure change for tomorrow.
The client requests no contact from agencies or media sales.