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As #PFMonth comes to an end, we remain committed to supporting #PF patients all over the world in their fight for better access to treatment and…
.As September comes to an end, our work does not! Join us or a national organisation, get involved and help us in our mission to improve the lives of…
But there might be more effective biomarkers. “In a couple of years, we should be using biomarkers routinely. If we can develop a biomarker that…
There is joy in small things, don't give up on life." (Chantal Vandendungen)
In an effort to give #PF patients a voice and inform about this rare lung disease, Boehringer Ingelheim is offering the podcast 'Journeys through…
By sharing their perspectives and individual experiences, patients can contribute significantly to the work of researchers as well as clinicians: …
“We have seen that we’re moving towards trials which are more inclusive of patients with any form of PF. That change will make it easier for patients…
“Several lines of evidence imply that in IPF progression, acute respiratory deterioration including acute exacerbation and mortality are associated…
#PF Patients need better and quicker access to psychological support: “I had panic attacks, I couldn’t do my job as well and it also had a financial…
“It is very important that patients and clinicians work together. The EU has a tradition of supporting research in rare diseases.” (Liam Galvin)
“To improve and personalise treatment of IPF, we should also include patient perspectives and Quality of Life.” Read more about “Integrating Patient…
“Although personalized medicine is not yet established in IPF with regard to genetic alterations, in the next years it could become a concrete…
ILD nurses are one of the most important pillars of support in the beginning as well as throughout the course of the disease: “There is a lack of…
• to be involved in research and be partners at eye level • for their advocates to have unrestricted access to scientific congresses • better…
#lung #transplant recipient Roberto shares his experience and a message of positivity with the PF# community around the world!
Empathic doctor-patient communication is essential for patients to open up and feel encouraged to share their feelings: “Sometimes patients are…
The common goal of the research community is to find a cure for #PF: “I’ll be optimistic and say that it will be possible to reverse PF in the…
#PF patients and carers need better support and guidance in adapting their lives to a new situation and changed needs: “We tried to simplify our…
You’re not on your own in the fight against #PF: find your national patient organisation and peer support here. “To have my wife diagnosed with an…
#PF Patients “face tough challenges due to slow diagnosis and difficulties in accessing treatments and supportive care. They fight both the disease…
At the end of #IPF Awareness Week we want to thank all of you for your commitment, sharing and contributing to our common cause and raising awareness!…
Patients who suffer from a progressive disease are sometimes tempted to give up exercising and think it didn’t help. Don’t give up – even when you…
Despite significant progress in research, treatment options like antifibrotic drugs & a higher life expectancy compared to 15 years ago, there is…
To clinicians, carers, researchers and others: Join us and help raise awareness of #PF! “Awareness campaigns play an important role in getting…
Compared to other serious diseases, there is still a lack of awareness of #PF, which is why patients with PF often feel misunderstood: “Anxiety for…
“But it’s not just about finding better treatments, it’s about finding ways to identify patients with PF earlier before there is a lot of scar tissue…
“Patient organisations can help by lobbying hospitals, clinicians and professionals to realise that exercising is important and access to…
We would like to ask policymakers, doctors, researchers and the public to act now and raise awareness of #PF and to encourage people to see their…
“Do not lose time.” Our member organisation The Hellenic Pulmonary Fibrosis Association with an urgent appeal to all those who show symptoms such as…
It is vital to raise awareness of PF and encourage people to go and see their doctor at the first symptoms!
Ron’s message to healthcare professionals: “Reassure the patient it’s okay to feel low. There is now shame in seeking help. Put them in touch with…
Ron’s message to healthcare professionals: “Reassure the patient it’s ok to feel low. There is no shame in seeking help. Put them in touch with other…
There are many ways to keep fit and improve your quality of life. Ron Flewett for example has been riding an electric bike: „It has enabled me to…
Joep Welling, patient and speaker at #PFSummit21, shares his advice on quality of life for both patients and carers: “Make sure that you as a patient…
Current bid is 125€
Our Australian friends made this video about Bill Van Nierop in 2019
"I manage a Facebook group for people with IPF and my husband is president of an organisaiton that with other support groups has organised…
Anne Cathrine from Norway: "Today I have just completed a completely different type of training; 30 min chair yoga specifically designed for IPF…
Despite IPF being such a serious disease, there are still ways to enjoy life: "A chronic disease is an adjustment of life – not the end of it. There…
“Listen to your body, believe in yourself and fight IPF, with hope and love for life!” – the members of the Greek patient organisation Lungs for Life,…
Patient organisations can also play a major role in providing support for loved ones and carers: “Support groups are important for families and…
#IPF not only affects patients – it also puts a burden on caregivers and loved ones who often don’t receive the much-needed psychological support:…
The EU-IPFF board and secretariat raising awareness for #IPF and challenges that still need to be addressed! Will you join us in our cause? Share a…
Patient organisations can contribute a great deal to patients’ quality of life and serve as a point of contact, a source of information and provide…
Ron was diagnosed with #IPF in 2014
Steve Jones, President of The European Pulmonary Fibrosis Foundation (EU-IPFF)
Francesco Bonella, Center for interstitial and rare lung diseases, University of Essen, Germany
PF and palliative care: "Palliative care is a form of care that provides a relief of disease symptoms. (…) it's appropriate at any stage of a disease.…
Video testimony by Ron Flewett
During IPF awareness week 18-25 September
Robert had a double lung transplant. See his #testimony.
- in their fight for better therapies and quality of life! Thanks to our member organisations for support and good luck with the campaign!
No current treatment has proven effective in stopping progression of the disease. But current research brings hope to people with Pulmonary Fibrosis.…
Ernes Fusi was diagnosed 3 years ago
But treatments can slow down the progression and improve symptoms.
Downloadable template of our paper-cut #lung available
Patients around the world are united in their fight for better therapies and quality of life!
Promoted by, AMMP – Forlì, Unione Trapiantati Polmone – Padova ODV, Un Soffio di Speranza – Pistoia
Please feel free to join our YOGA classes from 18th - 25th September.
Achille Abbondanza has cycled almost 18.000 km during the past six years
Cut #BreathingLifes unique key visual and make a selfie
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PF patients may face delayed diagnosis, lack of access to the right specialist and lack of information about their disease.
Few people have ever heard of the disease
PF Awareness Month coming closer
- including flyers, bookmarks, postcards, stickers and posters. Download and share them to raise awareness, even after the campaign is over! Thank…
