Steve Jones, President of EU-IPFF and PF patient:
“It is vital to raise awareness of PF. More people die from pulmonary fibrosis than some well-known types of cancer, but few people have ever heard of the disease. Patients face tough challenges due to slow diagnosis and difficulties in accessing treatments and supportive care.
They fight both the disease and the lack of understanding among policymakers, doctors, researchers and the public. It is vital we do all we can to raise awareness of this cruel disease affecting so many European families and to encourage people to go and see their doctor at the first symptoms since early diagnosis and early treatment lead to better outcomes.”
Breathing Life 2022 Campaign Report
This report summarises the activities carried out by Patvocates on behalf of the European Pulmonary Fibrosis Federation (EU-PFF) for the 2022 #BreathingLife Awareness Campaign.
Building on the concept of the Breathing Life Awareness Campaign established in 2021 and following its success, the second iteration in 2022 saw a continuation of its core principles and topics: using facts, figures and stories of patients suffering from PF, and with an additional focus on education and on the recently published consultation guides for both healthcare practitioners and patients, this one-month-campaign run throughout the month of September was aimed at at raising awareness of Pulmonary Fibrosis (PF) and specifically of Idiopathic Pulmonary Fibrosis (IPF) during IPF Awareness Week, and creating a broader public impact.
What is Pulmonary Fibrosis (PF)?
Pulmonary Fibrosis (PF) is a progressive, irreversible, chronic lung disease causing scarring of the lung tissue with no known cure. About 400,000 people in Europe live with Pulmonary Fibrosis and some 100,000 patients die each year from the disease. The most common type of PF is IPF (Idiopathic Pulmonary Fibrosis), accounting for 200,000 patients in Europe. On average, PF patients die within 3–7 years of diagnosis.
PF Awareness Month and the "Breathing Life" Campaign
Despite PF being such a serious disease, there is still a lack of awareness, which can result in late diagnosis, losing valuable treatment time and, above all, time to enjoy life.
PF Awareness Month - again using the slogan “Breathing Life” in 2022 - wants to draw attention to PF, its implications and the changes it brings about in daily life as well as the physical and psychological strain that the disease places on patients and their loved ones - but also to the essential moments of lightness, normalcy and happiness that patients with PF still experience despite this burden.
EU-IPFF’s PF Awareness Month takes place each September and coincides with the globally recognised Pulmonary Fibrosis Awareness Month established to raise awareness of PF and help patients, carers and families who have been affected by this terminal condition. Additionally, EU-IPFF puts emphasis on key topics such as:
- The disease Pulmonary Fibrosis (PF) / fibrotic interstitial lung disease (fILD)
- Disease course and progression
- Treatment (pharmacological and non-pharmacological)