Lead. Influence. Transform.

The Brittle Bone Society is seeking an exceptional Chief Executive Officer to lead the organisation into its next chapter.

Established in 1968, the Brittle Bone Society is the leading organisation supporting people and families affected by Osteogenesis Imperfecta (OI) across the UK and Republic of Ireland. Through support, advocacy, information, research and practical assistance, the Society works to improve the lives and experiences of people living with OI.

The Opportunity

Reporting to the Chair of the Board of Trustees, the CEO will provide strategic and inspirational leadership across the organisation, ensuring that the voices and lived experiences of people affected by OI remain at the heart of everything BBS does.

You will lead the development and delivery of the Society's future strategy, working closely with trustees, staff, volunteers, members and partners to strengthen impact and build a sustainable and ambitious organisation. You will also have the opportunity to develop a small team, creating new ways of working within a new environment and supporting a positive and collaborative organisational culture.

A key part of the role will be to develop BBS's financial sustainability, identifying new opportunities for fundraising, income generation, partnerships and collaboration. You will also be an influential ambassador for the Society, developing relationships across healthcare, research, government, philanthropy, business and the wider third sector.

We are looking for a confident and values-led leader who can combine strategic thinking, commercial acumen and strong relationship-building skills with a genuine commitment to improving the lives of people affected by OI.

About You

You will bring significant senior leadership experience and a proven ability to translate strategy into meaningful outcomes.

You will be:

• An inspirational and inclusive leader who can bring people together around a shared purpose.
• Strategically minded, with the ability to develop and deliver ambitious organisational plans.
• Commercially astute, with experience of developing sustainable income and managing organisational resources.
• An accomplished relationship builder who can influence and engage senior stakeholders.
• Comfortable working with and reporting to a Board of Trustees.
• A compelling communicator and advocate, able to represent BBS nationally and build its profile and influence.
• Committed to ensuring that people with lived experience have a voice in shaping the organisation.

Experience within the charity, health, disability, rare disease or membership sectors would be advantageous, although we are equally interested in exceptional leaders who can bring relevant experience and a fresh perspective.

Why BBS?

This is more than a senior leadership role. It is an opportunity to lead an organisation whose work has a direct and meaningful impact on the lives of people and families living with Osteogenesis Imperfecta.

You will be joining a strong foundation, a passionate community and an organisation with a clear purpose - while having the opportunity to shape its future direction, strengthen its impact and increase its influence.

If you are an ambitious, collaborative and purpose-driven leader who wants to make a lasting difference, we would love to hear from you.

Apply

Brittle Bone Society is working exclusively with AVIIA on this appointment.

For an informal and confidential conversation about the role, or to request a candidate information pack, please contact Debbie Shields at 07838 999959 or Lauryn Pringle on 07737 406752 at AVIIA.

Closing date: Monday 12th of October at midnight

First stage interviews: w/c 26th of October 2026

Brittle Bone Society is committed to equality, diversity and inclusion and welcomes applications from candidates from all backgrounds. Applications from individuals with lived experience of disability and/or rare disease are particularly welcomed.

We are committed to ensuring an accessible and inclusive recruitment process. If you require any reasonable adjustments or support at any stage of the application or interview process, please let us know and we will be happy to accommodate your needs wherever possible.

Full Job Description Document >

www.brittlebone.org