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The European Reference Network (ERN) aims to connect highly specialised healthcare professionals across EU Member States and to thereby improve access…

Publications, statements and declarations

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Consultation guides to Patients and Health Care…

15-07-2022

The Consultation Guide for patients is in different languages and in short video clips

News

When Pulmonary Fibrosis is a hereditary condition

05-07-2022

Longfibrose Patiëntenvereniging in the Netherlands has produced an information folder

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The IPF Charter

26-01-2021

Patient advocacy groups play an important role in supporting patients with chronic diseases and promoting better care. The EU-IPFF Charter for better…

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EU-IPFF Benchmarking Report Training Sessions

01-06-2021

With a view to driving evidence-based policies, the European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) commissioned a…

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EU-IPFF Benchmarking Report 2020

01-06-2021

The content of the Benchmarking Report represents the views of the authors only and is their sole responsibility. The 2020 Benchmarking Report is the…

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A Snapshot of IPF Care in Europe

15-12-2020

The EU-IPFF Benchmarking Report National IPF patient organisations have capitalised on this growing political focus, joining hands to drive policy…

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Pulmonary fibrosis patients should be given…

06-01-2021

The European Idiopathic Pulmonary Fibrosis & Related Disorders Federation (EU-IPFF) and the European Reference Network on Rare Respiratory Diseases…

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Declaration on IPF

15-12-2020

In April 2016, a Written Declaration on IPF was launched with the support of 16 Members of the European Parliament (MEPs). The Declaration aims to…

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EU-IPFF statutes

22-01-2021

The EU-IPFF was established as an international non-profit association and is submitted to the conditions of Title III of the Belgian law of June 27,…

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A BREATHE Vision for 2030

29-03-2021

The Breathe Vision for 2030 reflects changes that lung patients want to see in their lives in the coming years. This initiative is led by a number of…

Articles

News

Research perspectives in IPF

17-09-2021

Francesco Bonella, Center for interstitial and rare lung diseases, University of Essen, Germany

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French Health Authorities publish IPF National…

04-08-2021

The document that covers all aspects of IPF

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Patient Reported Experiences and Delays During the…

04-08-2021

ORIGINAL RESEARCH article Front. Med., 04 August 2021 | From the onset of symptoms to diagnosis of pulmonary fibrosis, the patient journey involves…

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How treatment burden affects the carer: the…

29-03-2021

In this issue of breathe, CEO of EU-IPFF Liam Galvin talks about his life with his wife, Phyl, who passed away from idiopathic pulmonary fibrosis…

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Discussing treatment burden

09-03-2021

Healthcare professionals should help patients to reach informed decisions about treatments in order to maximise benefits while minimising treatment…

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Lung transplantation: the patient view from either…

09-03-2021

The experiences of two patients: one waiting for a lung transplant, the other a lung transplant recipient, published in Breathe on 5 March 2021

Reports

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Breathing Life 2022 Campaign Report

22-11-2022

This report summarises the activities carried out by Patvocates on behalf of the European Pulmonary Fibrosis Federation (EU-PFF) for the 2022…

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#PFSUMMIT21 - Report

17-05-2021

The PF Summit was the first virtual European Pulmonary Fibrosis event bringing together patients and caregivers, healthcare professionals, policy…

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PF-Awareness Campaign 2021 Report

11-01-2022

Breathing Life Campaign

Videos

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Campaign 2022 video: “We are a united team against…

11-10-2022

#I have learned how powerful hope is.” Chantal Vandendungen shares her experience as a caregiver for her husband Albert who was diagnosed with #IPF in…

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Campaign 2022 video: “We are not only the body, we…

11-10-2022

"Strive to understand, praise and love yourself.” Elina Vogiatzaki, daughter of a #PF patient and & founder of PhytoCognition, with a powerful message…

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Campaign 2022 video: “When I sing, I don’t…

11-10-2022

IPF patient Beppe Pennisi finds confidence in singing. Watch the video to see his performance. #BreathingLife #CurePF #PulmonaryFibrosis #PFMonth

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Campaign video 2022: "It's not a disease that…

11-10-2022

- says Günther Wanke, Founder of Lungenfibrose Forum Austria & #IPF patient, and shares a message of optimism. LINK TO VIDEO: https://vimeo.com/

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Campaign video 2022: "To stay active is the most…

11-10-2022

Para dance teacher and #IPF patient Elaine Kirby tells her story.

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Campaign video 2022: “Why dwell on things?"

11-10-2022

Just get on with your life and give your family the best you can give them.” #IPF patient and motorcycle enthusiast Geoff Gardner shares a powerful…

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Campaign video 2022: Achille Abbondanza with a…

01-10-2022

“I imagine so many rare people They walk in the meadow of life Each one holding a flower”

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Campaign 2022 video: “I wish that I had had the…

11-10-2022

- when I first developed symptoms of #IPF. It would have saved me a lot of trouble. Please read the guide”. Follow Steve Jones’ advice and get the…

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Campaign 2022 video: "It is vital to educate…

11-10-2022

- says Michael Kreuter, recommending the EU-IPFF Consultation Guides for HCPs and patients. Get the guides here: UPLOAD VIDEO: https://vimeo.com/

News

EU-IPFF #3 webinar 2022: The importance of…

16-06-2022

Third EU-IPFF webinar leading up to the European Pulmonary Fibrosis Summit in November 2022: "The Importance of Clinical Trials", held by Dr Tamás…

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EU-IPFF #2 Webinar 2022: “The Genetics of…

16-06-2022

Video recording with translations available

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Webinar #1 2022 "How did I get Pulmonary Fibrosis"

01-04-2022

Held 28 March 2022 by Dr. Simon Hart, York Medical School/University of Hull

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The journey to diagnosis in patients with…

20-10-2021

Infographic and videos in different languages now available

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#PFSUMMIT21 - Video recordings of the sessions

07-05-2021

Please find links to videos of the #PFSUMMIT21 First PFSUMMIT Day 23 April 2021 Opening Session Mechanism of action of fibrosis and new insights…

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Video recording of webinar IPF & Cancer

01-06-2021

EU-IPFF Webinar on IPF and Cancer based on the results of the European initiative DIAMORPHOSIS, held by Francesco Bonella, MD PhD, Ruhrlandklinik…

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#PFSUMMIT21 - Video recording of industry…

07-05-2021

Breaking barriers: How to optimize communication between physicians, patients and loved ones Agenda of the session: Welcome and introduction …

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#PFSUMMIT21 - Video recording of industry …

07-05-2021

Improving the path to diagnosis in Europe: the doctor, patient and caregiver’s perspective This is an industry symposium. The Objectives of the…

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Webinar 1 December 2020: COVID-19 and Pulmonary…

03-12-2020

At the webinar Prof. Gisli Jenkins from University of Nottingham, presented research and advice regarding COVID-19 and Pulmonary Fibrosis followed by…

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Video recording from EU-IPFF webinar 20 January…

21-01-2021

EU-IPFF Webinar on Progressive ILD and Comorbidities held by Michael Kreuter, ILD Center, Thoraxklinik, University of Heidelberg and German Center for…

News

Webinar: Genetics in ILD - Genotypes, Phenotypes…

09-02-2021

Another well visited EU-IPFF webinar - this time on Genetics in ILD - Genotypes, Phenotypes and the Future. Please also find the link to the survey…

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Video recording of fourth EU-IPFF Webinar on…

18-03-2021

The webinar took place on 17 March 2021

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The ideal IPF diagnostics path

18-02-2021

Please watch videoes on the ideal diagnostic path for idiopathic pulmonary fibrosis (IPF)

Campaign videos 2021

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Campaign 2022 video: “We are a united team against…

11-10-2022

#I have learned how powerful hope is.” Chantal Vandendungen shares her experience as a caregiver for her husband Albert who was diagnosed with #IPF in…

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Campaign 2022 video: “When I sing, I don’t…

11-10-2022

IPF patient Beppe Pennisi finds confidence in singing. Watch the video to see his performance. #BreathingLife #CurePF #PulmonaryFibrosis #PFMonth

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The reality of living with Pulmonary Fibrosis

02-06-2022

EU-IPFF President Steve Jones talks about the reality of living with pulmonary fibrosis in this video shown at the American Thoracic Society's…

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Ron Flewett I

30-09-2021

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