Trustee (Lived Experience of Pulmonary Fibrosis)

Action for Pulmonary Fibrosis (APF)
Hybrid (UK-wide) | ~4 Board meetings per year + flexible participation options

Do you have personal experience of pulmonary fibrosis and want to use your voice to shape change?

Action for Pulmonary Fibrosis (APF) is the UK’s leading charity for people affected by pulmonary fibrosis. We are looking for a Trustee with lived experience to join our Board and help ensure the voices of patients, families and carers are at the heart of everything we do.

We recognise that living with pulmonary fibrosis can be challenging. We are committed to supporting Trustees in a way that works for them, including options to join meetings remotely where needed.

Why join APF?

Pulmonary fibrosis brings complex and often challenging experiences for individuals and those around them. At APF, we work to improve support, drive research, and influence policy and care so that people affected by pulmonary fibrosis are better supported at every stage of their journey.

As a Trustee, you will help ensure that lived experience shapes our decisions, priorities and culture, influencing how we design services, set direction and deliver meaningful change.

Who we’re looking for

We are particularly keen to hear from people who bring lived experience of pulmonary fibrosis, for example as a:

• Person living with pulmonary fibrosis
• Carer, family member or close supporter
• Someone closely affected by the condition

You do not need previous Board experience. We are looking for people who can:

• Share insight and perspective to inform strategic discussions
• Reflect the needs, challenges and priorities of the PF community
• Ask questions, contribute ideas and challenge constructively
• Work collaboratively and respectfully with others

We would also welcome, but do not require, experience in areas such as:

• HR, people management or organisational culture
• Fundraising, supporter engagement or community development

The role

As a Trustee, you will:

• Help shape APF’s strategy and long-term direction
• Ensure strong governance, accountability and financial oversight
• Bring lived experience insight into Board discussions and decisions
• Help ensure services, research, information and campaigns reflect real needs
• Highlight barriers, inequalities and opportunities for improvement
• Contribute to subcommittees or projects where your perspective adds value

Time commitment

• ~4 Board meetings per year, with flexibility to attend remotely where needed
• Preparation time for meetings
• Occasional participation in subcommittees or advisory work, depending on your interests

We will work with you to ensure participation is manageable and accessible.

This is a voluntary, unpaid role. Reasonable expenses are reimbursed, including travel and caring costs where needed.

Our commitment to inclusion

We want our Board to reflect the diversity of the communities we serve. We actively encourage applications from people of all backgrounds and experiences, including those who may not have held a trustee role before.