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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.