Trustee (various positions)

PNH Support is celebrating its 10 year anniversary this year! Much has changed for patients living with the ultra-rare blood condition paroxysmal nocturnal haemoglobinuria (PNH) during this time including the development of a number of new treatments which have transformed many lives. Despite this, patients still face other continuing challenges, for example, dealing with fatigue and the psychological impact of living with a chronic disease. Importantly, patients also need their voices to be represented independent of healthcare professionals. As PNH Support can only continue to support the PNH community with the help of Trustees and volunteers, we are seeking new Trustees to become actively involved in our management and governance including the implementation of our recently developed 5 year strategy. Whether you are an experienced Trustee, or are considering your first appointment, wewould love to hear from you!

Our vision is “No PNH patient in England, Wales and Northern Ireland is alone. All are represented and enabled to live to their full potential with PNH.”

Our mission is to provide support through peer-to-peer contact, educational resources and advocacy.

The Board has recently undertaken a stakeholder engagement exercise to develop our new 5 year strategy to 2030 and new Trustees joining our Board will assist with executing and implementing this plan. Our Board will play a vital role in shaping the future of PNH Support, guiding our strategic direction, setting the budget, and making key decisions on significant initiatives. This is an exciting time to be joining PNH Support as our Board is expanding to drive the new 5 year strategic vision forward!

Becoming a Trustee at PNH Support is both a privilege and a responsibility. This role provides a unique opportunity to make a meaningful impact to the lives of people affected by PNH as well as for their families. As a Trustee, you will help guide the charity, ensuring we stay true to our mission and achieve significant results. Your leadership and insights will be vital to the charity’s success.

The Trustee Board is a diverse and committed team that provides governance and oversight. They ensure that the charity operates ethically, efficiently, and in line with its strategy.

This is an exciting time to be joining PNH Support as our Board is expanding to drive the new 5 year strategic vision forward! Becoming a Trustee at PNH Support is both a privilege and a responsibility. This role provides a unique opportunity to make a meaningful impact to the lives of people affected by PNH as well as for their families. As a Trustee, you will help guide the charity, ensuring we stay true to our mission and achieve significant results. Your leadership and insights will be vital to the charity’s success.

The Trustee Board is a diverse and committed team that provides governance and oversight. They ensure that the charity operates ethically, efficiently, and in line with its strategy. You are not expected to have in-depth knowledge of the legislation governing our work, as we will provide the necessary support and training as required. However, it’s important to be aware
that such legislation exists, and to ensure that PNH Support has the appropriate policies, procedures, and reporting mechanisms in place to maintain compliance where required.

Key responsibilities include:

• Strategic Leadership: Shaping and guiding PNH Support’s vision and future direction in line with the new 5 year strategy.
• Legal and Regulatory Compliance: Ensuring adherence to UK charity laws and fulfilling all reporting obligations.
• Financial Oversight: Monitoring the charity’s finances, safeguarding its assets, and managing risks effectively.
• Governance and Accountability: Promoting transparency, participating in decisionmaking, and overseeing management practices.
• Advocacy and Representation: Acting as an ambassador for the charity, promotingits mission and values to the wider community.