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Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
We are entering a period of unprecedented opportunity. Advances in treatment, increasing recognition of the condition, and growing awareness of healthcare inequalities provide a unique chance to strengthen our impact and expand our reach across the UK. Our ambition is bold: to engage and support at least 50% of the UK myasthenia community as members within the next five years, creating a movement that is representative, influential and impossible to ignore.
The successful candidate will lead the development of a thriving national community of people affected by myasthenia, ensuring that individuals and families feel connected, represented and empowered. They will transform community insight into meaningful campaigns, influence policy and healthcare decision-making, and position myaware as the authoritative voice for everyone affected by the condition.
Success in this role will be measured not only by influence and campaigning outcomes, but by the growth, engagement and mobilisation of our community. The Director will play a central role in delivering our ambition to reach, engage and retain 50% of the UK's myasthenia population as members and active supporters within five years, creating a change-maker movement that is representative of our goals.
Key Responsibilities
Community Growth and Engagement
- Contribute towards the development and delivery of a comprehensive membership growth strategy aimed at engaging at least 50% of the UK myasthenia community within five years.
- Build a deep understanding of the patient journey and identify opportunities to connect with people from diagnosis onwards.
- Lead the development of services, programmes and engagement approaches that increase membership recruitment, retention and participation.
- Ensure that people affected by myasthenia are at the heart of all organisational decisions, campaigns and strategic priorities.
- Create pathways for members, volunteers, supporters and ambassadors to actively contribute to myaware's work.
- Use data, insight and market intelligence to measure community reach, identify underserved groups and drive continuous improvement.
Campaigning, Policy and Influence
- Develop and implement a national campaigning and influencing strategy focused on awareness, equity of care, access to treatment and service improvement.
- Position myaware as a leading voice within healthcare, policy and rare disease discussions across the UK.
- Build strategic relationships with parliamentarians, government departments, NHS organisations, Integrated Care Boards, NICE, clinicians, researchers, industry partners and allied charities.
- Lead public affairs activity, including consultation responses, parliamentary engagement, policy briefings and stakeholder events.
- Ensure lived experience evidence informs policy development, healthcare decision-making and treatment access discussions.
Organisational Leadership
- Serve as a member of the Senior Leadership Team and contribute to organisational strategy and performance.
- Foster a culture of innovation, inclusion, collaboration and measurable impact.
- Work closely with fundraising, communications, partnerships, and service delivery colleagues to maximise organisational reach and effectiveness.
Awareness and Public Engagement
- Increase awareness and understanding of myasthenia among healthcare professionals, policymakers, media and the public.
- Lead initiatives that strengthen myaware's visibility, reputation and influence.
- Support the development of compelling campaigns, media activity and storytelling that inspire engagement and drive action.
- To be the spokesperson for myaware.
What Success Looks Like
Within five years, the postholder will have:
- Led significant growth in membership, progressing towards engaging at least 50% of the UK's myasthenia community.
- Increased participation in surveys, campaigns, events, volunteering and lived-experience activities.
- Established myaware as the recognised national voice for people affected by myasthenia.
- Secured meaningful influence in policy, healthcare and treatment access discussions.
- Generated evidence of improvements in awareness, service delivery, treatment access and patient representation.
- Built a highly engaged and empowered community capable of driving change at local, national and system levels.
Person Specification
Essential Experience
- Significant senior leadership experience within the charity, healthcare, membership, public affairs or advocacy sectors.
- Proven success in growing and engaging communities, memberships, movements or supporter bases at scale.
- Experience developing and delivering campaigning, influencing or public affairs strategies that have achieved measurable outcomes.
- Strong track record of building relationships with senior external stakeholders and decision-makers.
- Experience using data, insight and lived experience to shape organisational priorities and influence strategy.
- Experience leading, motivating and developing high-performing teams.
Essential Knowledge and Skills
- Outstanding strategic thinking and leadership abilities.
- Exceptional communication, influencing and relationship-building skills.
- Strong understanding of community mobilisation, supporter engagement and membership growth.
- Ability to translate complex healthcare and policy issues into compelling public narratives and calls to action.
- Strong analytical and performance management skills.
- Commitment to inclusion, co-production and patient-centred approaches.
Personal Attributes
We are looking for someone who is:
- Ambitious about building one of the UK's most engaged rare disease communities.
- Passionate about amplifying the voices of people with lived experience.
- Collaborative and inspiring.
- Politically astute and credible with senior stakeholders.
- Resilient, innovative and outcomes focused.
- Motivated by creating lasting change for people living with long-term health conditions.
Why Join Us?
myaware is the only charity in the UK dedicated solely to the care and support of people affected by myasthenia.
This is a rare opportunity to build a community movement capable of transforming lives. You will lead the growth of a national membership community, shape policy and healthcare conversations, and help ensure that every person affected by myasthenia feels informed, supported, represented and connected.
Together, we aim to ensure that within five years, at least half of everyone living with myasthenia in the UK knows, trusts and actively engages with myaware as their community, their advocate and their voice.
We are working hard to raise awareness of myasthenia, as it is a little-known condition. We provide support for people with myasthenia and their families, whilst offering advice and tips for living with the condition.
We also fund the research that brings us closer to finding a cure as well as funding specialists nurses and advisors.
Members of myaware have full access to a wide range of support services and events including our specialist benefits and welfare advisor.
myaware supports people with myasthenia and their families. We campaign for better medical services for people with myasthenia and work to inform medical professionals.
The myasthenias are a group of neuromuscular conditions. They are rare but also manageable and can affect anyone, regardless of age, gender or nationality. Myasthenia gravis, ocular myasthenia and Lambert-Eaton myasthenic syndrome are autoimmune conditions whereas congenital myasthenic syndrome is caused by an inherited genetic fault. It is thought that there are approximately 20,000 people currently living with myasthenia in the UK.
Benefits
- Generous holiday allowance
- Perkbox account (global benefits and rewards platform)
- Group Life Assurance after 6 months of service
- NEST workplace pension scheme
- Free inhouse staff benefits and welfare advice
- Investment in your personal and professional development
- Annual salary review
Application instructions
Candidates should submit their CV and tailored covering letter by: 11:30pm on Friday.4th September
Provisional interview dates will be week commencing: 28.9.26
Interviews will be held over Microsoft Teams.
Applications submitted without a tailored cover letter will not be considered.
This post, due to its nature, duties and responsibilities, will be subject to an enhanced check by the DBS. This is funded by myaware.
This organisation supports anonymous recruitment. That means hiding your personal identifying information, removing bias from the hiring process.
The client requests no contact from agencies or media sales.
The client requests no contact from agencies or media sales.
Thank you!
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
Thank you!
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.
- 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.
Registered Charity
51 - 100
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.