Chief Executive Officer

CamRARE is on a mission to make life with a rare condition easier through connection, collaboration and community.

Applications close: 9 a.m. Monday 9th March 2026

Location: Hybrid (with in person meetings in Cambridge and across the UK)

Who we are

CamRARE are a well-established, well-respected charity with a strong track record of impact over the past decade. We exist, as there are over 10,000 rare conditions that affect 400 million people globally. Receiving a diagnosis can take years. Most rare diseases have no treatment and often poorly coordinated care.

Our goal is to have a strong collective voice in improving services and influencing policy so that families affected by rare conditions can access good healthcare, find a diagnosis, reach the right treatment or support.

We are now at a pivotal point of growth. We are investing in the next phase of our development, supported by a strong budget and a healthy level of unrestricted reserves. This growth brings opportunity, but also responsibility.

We need a Chief Executive who can lead our fundraising strategy, build a sustainable business plan and grow our reach and visibility so that more families can access support.

A distinctive feature of our work is that we connect two pillars that are often kept separate: community and research. Through our unique in-person community, we bring families together in a way that is rare in this field. In parallel, we are building an ambitious research focus, including an emerging platform designed to connect patients and researchers, support new ideas, and strengthen patient-led research. We believe families and researchers achieve more when they work together, and we are proud to be a trusted connector with a broad network.

Leading CamRARE

As Chief Executive, you will provide strategic leadership for the charity, oversee governance and operations, develop and execute the strategy set by the Board of Trustees, and build key external partnerships. This role leads fundraising efforts and develops high-level external stakeholder relationships with Government bodies, including healthcare organisations/departments, Industry, patient and charity organisations, and Research Institutions involved in rare disease.

This is a key role to build, strengthen and nurture the charity's connection with the rare disease community, empowering them and fostering an inclusive and supportive network.

We are looking for someone who can:

• Lead the next chapter of our strategy with the Board, translating ambition into clear priorities and a deliverable plan
• Develop and drive a compelling fundraising and income generation strategy, including exploring novel and commercial routes where appropriate
• Be the public face and voice of the charity, with the ability to listen deeply to families and communicate their needs with clarity and credibility
• Sustain, enhance and grow community support, including improving reach into underserved areas and strengthening what we offer across key life stages
• Strengthen and stabilise funding for our research work, including the next phase of our research network platform and services that can generate income from research partners
• Build confident, values-led leadership across the staff team, with strong emotional intelligence and a people-first approach

About you

We are open-minded about background, but we expect you to bring:

• A strong track record of revenue generation, fundraising, and building sustainable income
• Strategic leadership capability, with the creativity and judgement to stay focused and avoid diluting impact
• Confidence in representing an organisation externally, including public speaking and partnership-building
• High emotional intelligence and a leadership style that puts people first
• Comfort working in a flexible pattern, with regular in-person presence at events in Cambridge, London and across the UK (and occasionally Europe)

Working pattern and accessibility

The role is flexible, with an expectation of roughly 60% remote working and 40% in person, including travel for events and meetings.

We are also open to discussing options such as compressed hours or an 0.8 FTE arrangement, depending on the candidate and what will set the role up for success.

We are committed to inclusion and accessibility and can offer adjustments throughout the process. We also have experience supporting colleagues through Access to Work.

Why this opportunity?

This is a CEO role with genuine scope to shape the next five years. You will inherit a strong foundation, a committed Board, and a team that cares deeply about families and impact. If you are motivated by growth, visibility, and meaningful change, you will find huge purpose here.

Please click 'Redirect to recruiter’ to be redirected to the Peridot Partners website, where you can find full details of the candidate profile and register your interest to apply.

Applications for this role close at 9 a.m. Monday 9th March 2026