Chief Executive

We're on a mission to make life with a rare condition easier through connection, collaboration and community.

About CamRARE

We at CamRARE are a well established, well respected charity with a strong track record of impact over the past decade. We exist because 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 to improve services and influence policy so that families affected by rare conditions can access high quality healthcare, find a diagnosis and receive the right treatment or support.

About the role

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.

Who we are looking for

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).

Please click 'Apply on website' to be redirected to the Peridot Partners website, where you can find full details of the job description and register your interest to apply.

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