Chief Executive Officer

Help shape a medical profession that can provide timely diagnosis and excellent care to people living with rare conditions.

Location: Remote with regular UK travel

Applications close: 9 a.m. Monday 23rd November 2026

The opportunity

Medics For Rare Disease is a specialist charity working to improve understanding of rare disease across the medical profession and health system. Through education, advocacy and lived-experience insight, we help healthcare professionals provide better recognition, support and care for people living with rare conditions.

After more than a decade of founder leadership, we are looking for a new Chief Executive to lead our next phase. This is a thoughtful and planned transition, with a committed remote team, a respected profile and strong relationships across the rare disease ecosystem. It is also a moment that calls for fresh perspective, clear priorities and a more resilient financial model.

Our next Chief Executive will protect the quality of the work already underway while helping us make deliberate choices about where our capacity can have the greatest impact. A central opportunity will be Rare Aware, an emerging accreditation concept with the potential to help organisations improve how they understand and support people living with rare conditions. The new CEO will have real freedom to shape its strategy, funding and delivery model.

Your priorities:

• Support and stabilise the team, reviewing priorities, capacity and ways of working.
• Secure funding for the next phase, diversify income and strengthen financial resilience and reserves.
• Develop a practical five-year strategy with the Board and team.
• Turn Rare Aware from a promising concept into a clear, funded and sustainable programme.
• Maintain trusted relationships with pharmaceutical partners while broadening the charity’s funding base.
• Build strong relationships across healthcare, the NHS, patient advocacy groups, policymakers and the wider rare disease community.
• Continue to strengthen education, advocacy and the use of lived experience across M4RD’s work.

About you

We are looking for a capable, curious and values-led leader who can combine strategic judgement with hands-on delivery. You will be comfortable reading financial information, deciding what matters most and leading a small organisation through its next stage of development. Credible experience of securing income or strengthening financial sustainability is important.

You will be an excellent listener, communicator and relationship builder. M4RD works with healthcare professionals, people with lived experience, patient advocacy groups, funders, policymakers and NHS stakeholders, so you will need to adapt your approach without losing clarity or purpose. Knowledge of healthcare, medical education or the NHS would be helpful, but it is not the only route into this role.

You may already be a Chief Executive, or you may be ready to step into your first CEO role after leading at senior level. We are open to different backgrounds and career paths. What matters most is the evidence you can provide of competence, motivation, sound judgement and the ability to bring people with you.

Medics For Rare Disease and Peridot Partners welcome applications from people with different backgrounds, perspectives and career routes. If you need information in another format or require reasonable adjustments at any stage, please contact our advising consultant at Peridot Partners.

Please click on the link to be redirected to the Peridot Partners website, where you can find full details of the role and how to apply.

Applications for this role close at 9 a.m. Monday 23rd November 2026.