NPUK is governed by its Articles and Memorandum and run by a Board of Trustees.
Registered as a private company limited by guarantee on 15 September 2011, NPUK operates with a clear charitable mission to relieve sickness and distress among families affected by Niemann-Pick diseases and to advance education about these conditions. This section provides insight into our structure, including the roles and responsibilities of our Trustees, membership policies, and commitment to transparency, ensuring we uphold our charitable objectives with integrity and accountability.
The Trustee Code of Conduct section details the standards of behaviour and responsibilities expected of Niemann-Pick UK’s Trustees and committee members, as outlined in our Code of Conduct, adopted on 15 December 2011. This code ensures that all decisions are made selflessly, with integrity, objectivity, and transparency, solely in the best interests of the charity and its beneficiaries. It provides clear guidelines on managing conflicts of interest, maintaining confidentiality, and upholding accountability, while setting out procedures for addressing breaches. This framework supports our commitment to ethical governance and fostering trust within the Niemann-Pick community.
The Conflicts of Interest Policy section outlines the procedures adopted by Niemann-Pick UK on 15 December 2011 to ensure Trustees act in the best interests of the charity. It requires Trustees to declare any direct or indirect financial or non-financial interests, including conflicts of loyalty, at the earliest opportunity, with a Conflicts of Interest Statement signed upon appointment and updated annually. The policy mandates transparency by recording conflicts in a register, reporting decisions in meeting minutes, and detailing benefits in the Annual Report. This framework promotes ethical decision-making and safeguards the charity’s integrity in supporting the Niemann-Pick community.
The Safeguarding Policy section details Niemann-Pick UK’s commitment to protecting vulnerable individuals, as outlined in our Safeguarding Policy and Procedure, approved on 13 June 2020, and the Online Safeguarding Policy and Procedure, approved on 17 June 2020. These policies establish clear guidelines for ensuring the safety of children and adults involved in our activities, including specific measures for online communications and events. Regularly reviewed and updated, with additions like managing online activities and supporting children during disclosures, these policies reflect our dedication to fostering a safe and supportive environment for the Niemann-Pick community.
Our Annual Reports review our performance each year and the progress we’re making against our aims and objectives.
Our Report and Financial Statements provide a financial review each year.