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Niemann-Pick UK (NPUK) Trustee Treasurer

Posted: 18.06.24

Niemann-Pick UK (NPUK)

Trustee Treasurer

Role Profile

NPUK (Niemann-Pick UK) is dedicated to making a positive difference to the lives of those affected by Niemann-Pick diseases & their families, from diagnosis to bereavement & beyond. Niemann-Pick diseases (NPD) are rare, progressive, inherited genetic conditions for which there is no specific treatment or cure.  We are a small but agile organisation, globally recognised for our world class communications, strong advocacy networks, and high impact partnerships with relevant stakeholders.

Our vision is a world where the burden of these diseases is minimised, where those affected have access to effective therapies, can meaningfully participate in society, reach their full potential, and achieve the best possible quality of life.

We are seeking a new Trustee Treasurer to join our supportive and engaged Board. The Treasurer will oversee the financial matters of the charity in line with best practice and in accordance with our governing document, plus relevant statutory and legal requirements.

The role of Treasurer is vital within our Trustee Board. Reporting to the Board at regular intervals, the Treasurer will ensure that we are compliant with statutory financial reporting requirements. They will ensure strategic plans are financially appraised and that budgets align to meet both our short and long term objectives.

Our work is entirely funded by voluntary donations, charitable grants and fundraising and is not duplicated by statutory services.  We are looking for a Treasurer who will not only keep us on track financially, but someone who will help to drive forward our vision for the future.

This role is strategic and non-operational and will suit an experienced and engaged candidate with professional expertise in finance and a knowledge of risk management.  The Treasurer will liaise with the Board of Trustees and the Finance Officer, reporting to the Board at regular intervals about the financial health of the Charity. Previous work within the voluntary sector would be an advantage.

Time Commitment

NPUK Trustees are invited to attend four meetings of the Board per year plus our annual conference (a two-day event) and to participate in ad hoc meetings / teleconferences as required. Meetings are held both virtually and in-person; in-person meetings are held at weekends, in central London and virtual attendance is also possible.  You must be willing to commit up to approximately 8 days (or 56 hours) each year, including reading and preparation for meetings. Trustees are not required to be present at every meeting, however it is advisable to attend as many as possible.


Our Trustee Board members have ultimate responsibility for directing the affairs of the Charity, ensuring it is solvent and well run, and delivering its charitable outcomes for the benefit of the public and for which it was set up. Our current Board members bring a wide range of skills and abilities, and actively contribute throughout the year to the achievement of our aims and objectives.


The role of NPUK Trustee is voluntary. Whilst the role is normally unpaid, reasonable out of pocket expenses are payable in line with the NPUK standard expenses policy.

Terms of Appointment

The usual term of appointment will be 3 years.

Trustee Role and Responsibilities

The Board of Trustees oversee the strategic and operational management of NPUK, in line with the aims and objectives of the Charity. The charitable aims and objectives of NPUK are:

To make a positive difference to the lives of those affected by Niemann-Pick diseases (NPD), relieve sickness and any distress which may arise there from, and to advance the education and awareness of families, professionals and the general public in all matters concerning the disease.

NPUK aims to meet these objectives by:

  • The provision of a support and advice service for families and individuals and associated and social care professionals
  • The collection, collation and dissemination of relevant information
  • The provision of support for national clinical centres of expertise for Niemann-Pick diseases
  • The promotion of relevant research
  • The promotion of national and international collaboration

Trustees are expected to undertake duties in a manner that reflects NPUK’s values and ethos, and which is open, non-oppressive, respectful, user-centred and committed to equality or opportunity.

For further information and to apply, contact:

Toni A Mathieson

Chief Executive, NPUK


Telephone: 00 44 (0)191 415 0693           Email:         Website: