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We're delighted to announce that we have appointed Steve Jones as our Patient President, a new honorary and voluntary role at Action for Pulmonary Fibrosis (APF).
As our new Patient President, Steve will help ensure the voice of people living with pulmonary fibrosis is represented across our work and in national and international conversations on pulmonary fibrosis.
Steve was diagnosed with idiopathic pulmonary fibrosis in 2008 and lived with the disease for eight years before receiving a single lung transplant in 2016. Since then, he has been a tireless advocate for people affected by the condition – leading campaigns, raising awareness, and connecting patients and families to vital support provided by APF.
As APF trustee and Chair (2016–2024), Steve campaigned to make anti-fibrotic drugs available to everyone with pulmonary fibrosis, as there were no drugs at this time for slowing down the pace of pulmonary fibrosis. Steve’s direct involvement is now ensuring fairer access to life-extending treatments. During the COVID-19 pandemic, Steve played a vital role, helping APF guide people living with pulmonary fibrosis and their caregivers through the challenges of shielding and treatment access, drawing on his own lived experience, offering reassurance and advice.
Speaking about his newly appointed role, Steve says
It is an incredible honour to become APF’s first Patient President. Pulmonary fibrosis changed my life, but it also gave me a purpose — to help others manage their own pulmonary fibrosis journeys. Working with APF has shown me the power of community, and I look forward to continuing to stand up for people living with pulmonary fibrosis, their families and carers and engaging with the health professionals that support them.
Daniel Saxton, our Chief Executive says:
Steve’s compassion, drive and determination are already making an extraordinary difference to thousands of people affected by pulmonary fibrosis. We are honoured to welcome him as our first Patient President. Ensuring lived experience shapes our work is central to our mission, and Steve’s influence will help us further strengthen the voice of the pulmonary fibrosis community in everything we do.