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Help safeguard our future: Join BBS UK as our Treasurer

Bardet-Biedl Syndrome UK (BBS UK) is seeking a new Treasurer to join our Board of Trustees and play a key role in ensuring the charity remains financially strong, sustainable, and well governed.

Bardet-Biedl syndrome (BBS) is a rare, complex genetic condition that causes blindness, learning disabilities, obesity, and a range of additional health challenges. BBS UK is the only UK charity dedicated to supporting individuals and families affected by BBS.

We provide advocacy services, NHS clinic support, publications, and community events that help people navigate life with BBS. Each year, we support over 700 individuals, working alongside a small team of dedicated part-time staff and committed volunteers.

It’s an exciting time to join our charity. We are looking to strengthen our governance and build on our financial foundations to support future growth and impact.

The role

As Treasurer, you will oversee the financial governance of BBS UK, working closely with the Board of Trustees, Operations Manager, and external accountant.

This is a strategic oversight role, not a hands-on bookkeeping position. Day-to-day financial administration is carried out by staff; the Treasurer provides assurance, guidance, and clarity to support good decision-making.

Key responsibilities include:

• Maintaining a strategic overview of the charity’s financial health

• Presenting clear summaries of financial information at Board meetings

• Advising Trustees on the financial implications of plans and decisions

• Overseeing the annual budget and supporting longer-term financial planning

• Ensuring appropriate financial controls and procedures are in place

• Supporting the preparation of annual accounts and liaison with the Independent Examiner

• Helping ensure appropriate reserves are maintained in line with policy

The Board of Trustees retains collective responsibility for the charity’s finances.

We’re looking for someone with:

Essential:

• Experience in finance, accounting, bookkeeping, or financial oversight

• Confidence interpreting financial information and explaining it clearly to non-financial colleagues

• Understanding of financial controls and good governance

• Ability to think strategically and identify financial risks

Desirable:

• Experience in a charity or not-for-profit setting

• Understanding of restricted and unrestricted funds

• Experience working with budgets or management accounts

We particularly welcome applications from people with lived experience of BBS or a connection to the BBS community, though this is not essential.

As a BBS UK Trustee, you will have:

• Induction, training, and ongoing support

• Reasonable expenses reimbursed

• Opportunities to develop new skills and contribute at a strategic level

• The chance to make a meaningful difference to a rare disease community

• Opportunities to collaborate with dedicated trustees, staff, and partners

Time commitment

• Attendance at four Board meetings per year (online, approximately 3 hours each)

• Reviewing financial information monthly or quarterly

• Additional input around budget setting and year-end accounts

• Attendance at our annual conference weekend (in person; expenses covered)

If you would like an informal conversation about the role before applying, we would be very happy to arrange a chat with our Chair.

BBS UK is committed to equality, diversity and inclusion, and we welcome applications from people of all backgrounds who share our values and want to support our community.