Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
Much has changed for the better of patients and their loved ones, including greater access to anti-fibrotic treatments, more shared care, so people don’t have to travel to get the specialist support they need, the growth of a dedicated registry to better understand PF across the UK, and the development of Action for Pulmonary Fibrosis ensuring people have access to peer support online, by phone and face to face. Plus, much more.
But, the truth is people are still dying far too soon from pulmonary fibrosis. Wife of Sid who died from pulmonary fibrosis in 2022 says:
“My husband had to wait months to be told he had pulmonary fibrosis. His Consultant said he didn't want to tell him, that he could wait another 6 months to see how it progressed. There were no treatments to give anyway. I was shocked because by the time my husband found out it was too late and he passed away aged 58.”
#OneVoiceILD believes that we are stronger together. We understand changes in care need to be efficient, cost effective and equitable. We are committed to greater collaborative working bringing together policy makers, pharmaceutical companies, researchers, clinicians and people affected by pulmonary fibrosis to improve the lives of people affected by this devastating disease.
Dr Nazia Chaudhuri, ILD Respiratory Consultant, says:
“As one voice working together with patients and carers we can continue to raise awareness of pulmonary fibrosis and ensure our policy makers are aware of the need to invest in services so we can continue to provide equitable and safe care for our patients.”
Get in touch with us at firstname.lastname@example.org to see how you can get involved.