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European Lung Foundation

The European Lung Foundation (ELF) was founded by the European Respiratory Society (ERS) to bring together patients and the public with professionals.

28/02/2026

💡 A new Primary Ciliary Dyskinesia (PCD) resource is now available in the ELF Information Hub.

This resource was developed in collaboration with the ERS Clinical Research Collaboration (CRC) BEAT-PCD and people living with PCD to offer clear and evidence-based information about:

🫁 Symptoms and causes

🫁 Diagnosis and long-term outcomes

🫁 Treatment and management options

🫁 Patient experiences

This , learn more about the challenges faced by people living with PCD and discover the latest news and research in this disease area.

🔗: https://europeanlung.org/en/information-hub/lung-conditions/primary-ciliary-dyskinesia-pcd/

28/02/2026

💙 Today is Rare Disease Day

A disease is considered "rare" when it affects fewer than 1 in 2,000 people, but collectively, rare diseases impact millions worldwide.

For people living with a rare lung condition, the journey to diagnosis can take years. Delays, misdiagnosis and limited awareness remain real challenges.

Earlier this month, we spoke with Myrona Goutaki, co-Chair of the BEAT-PCD clinical research collaboration (CRC), about the importance of patient involvement in rare disease research.

She told us:

💬 “Every day should be Rare Disease Day. We should never stop fighting for more visibility for rare diseases.”

🔗 Read the full interview: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/

27/02/2026

💻 Share your experience in our new online discussion groups

People with lived experience of lung conditions are invited to participate in a discussion on the “inhaled exposome”. This refers to the mix of things we breathe in from our environment over our lifetime that can affect lung health.

Your insights will support the new European Respiratory Society (ERS) Clinical Research Collaboration EXPLAIN-IT, helping researchers better understand environmental impacts on lung health.

Join one of our sessions:

🗓️ Wednesday 18 March, 17:30–19:00 CET
🗓️ Monday 23 March, 13:00–14:30 CET

🔗 Learn more and register: https://europeanlung.org/en/news-and-blog/join-our-online-discussion-on-the-inhaled-exposome-and-lung-health/

26/02/2026

Where do children and young people learn about health? Increasingly, the answer is social media – platforms like TikTok, where influencers, sometimes paid by commercial interests, shape what young people are exposed to.

Watch as Susanne Vijverberg, ERS Representative to EMA and member of the project, explains why this matters.

Help us defend science and protect health. Download and share campaign resources in eight languages: https://www.ersnet.org/advocacy/campaign-defend-science/

26/02/2026

💙 is 28 Feb!

Ahead of later this week, ELF is spotlighting an initiative helping improve research for people living with rare lung diseases.

The ERN‑Lung BREATHeREGISTRY is a European patient registry capturing both clinical and personal experiences of individuals with rare respiratory conditions.

By sharing their stories, patients and families provide vital data that helps researchers:

✨ Understand the day-to-day impact of rare lung diseases
✨ Inform better care strategies and treatment options
✨ Support more targeted and meaningful research

Your experience matters! Not just for today but for shaping the future of rare lung disease care across Europe.

If you are a patient, caregiver or healthcare professional, joining the registry helps advance knowledge and improve outcomes.

Learn more and consider registering: https://www.europeanlung.org/en/news-and-blog/ern-lung-breatheregistry-helping-to-improve-research-into-rare-lung-conditions/

25/02/2026

💬 “Every day should be rare disease day. We should never stop fighting for more visibility for rare diseases.”

For this month’s spotlight, we spoke to Myrona Goutaki, co-Chair of the BEAT-PCD clinical research collaboration (CRC), about advancing research in primary ciliary dyskinesia (PCD).

Ahead of on 28 February, she highlights the importance of including patient voices in rare disease research and calls for more accessible, patient-friendly resources to better support those living with rare conditions.

Read the full interview: https://europeanlung.org/en/news-and-blog/conversation-with-myrona-goutaki/

24/02/2026

📣 Help shape the future of pleural disease research in Europe.

The International Multicentre Pleural Research Collaborative (IMPACT), supported by the European Lung Foundation, has launched a new survey to understand what people with lived experience of pleural disease believe researchers should focus on in the future.

We want to hear from people living with pleural disease, those who have received treatment and family members or carers.

💡 “Pleural disease” is a term for problems with the thin layer that lines the outside of the lungs and the inside of the ribcage, helping the lungs move smoothly when you breathe.

The survey is anonymous and takes around 15 minutes to complete. It is available in English and closes on 1 May 2026.

Your experience will directly inform future research priorities.

🔗 Take part: https://europeanlung.org/en/get-involved/surveys/pleural-disease-research-a-survey-for-patients-and-carers/

23/02/2026

🚨 February’s Patient Organisation Round-up is here!

Each month, ELF spotlights the work of patient organisations around the world and the ways they are raising awareness and advocating for improved lung health.

In this month's Patient Round-up:

💡 Lung Cancer Europe announced the launch of its 11th Annual Report, which focuses on the mental health impact of lung cancer.

💡 MNT Mon Poumon Mon Air attended the 30th annual Congress of Pneumology of the French Language (CPLF) 2026 in Lille, where they raised awareness of NTM.

💡 The PinkTree Foundation brought lung health screening to Rashid Compound, a densely populated slum in Mumbai, India, to transform it into a “respiratory-safe” community through early detection and environmental advocacy.

Read the full round-up: https://europeanlung.org/en/news-and-blog/patient-organisation-round-up-february-2026/

21/02/2026

💙 ELF Patient Advisory Groups come together for ‘Stronger Together’

On 7 February, the European Lung Foundation (ELF) hosted its first-ever Stronger Together event, bringing Patient Advisory Group (PAG) members together to connect, share experiences and learn from one another across disease areas.

The event created space to reflect on achievements and look ahead to new opportunities for involvement, including activities linked to the European Respiratory Society (ERS) Congress, digital health initiatives and future advocacy and policy work.

Following its success, Stronger Together will now become an annual ELF event.

Read a summary of the event: https://europeanlung.org/en/news-and-blog/stronger-together-event-highlights-elf-collaboration-and-pag-achievements/

20/02/2026

The US has rolled back the legal finding that air pollution harms health, meaning there is no legal requirement to limit pollution levels.

Pollution harms health and the lungs. It can trigger asthma attacks, worsen chronic lung disease, and damage the lungs over our lives.

Removing a scientific finding does not make the evidence go away — it takes away the urgency to act on it.

Read our full response: https://europeanlung.org/en/news-and-blog/us-removes-scientific-basis-for-air-pollution-rules-what-this-means-for-public-health/

19/02/2026

📢 The Breathe Clean Air Patient Conference 2026 will begin shortly!

This free online conference brings patients and experts together to discuss the impact of indoor air pollution on lung health.

You will learn about a variety of topics, including:

🫁 The impact of moulds and moisture on lung health
🫁 Advice on symptom mitigation and how to talk to your consultant
🫁 Lived experiences and patient stories

🕙 10:00 – 15:30 CET

There is still time to join us for this event. Register now: https://us02web.zoom.us/webinar/register/WN_qX9YF4xWR4-JmU3zdO8l8g #/registration

18/02/2026

Good news from Belgium! Welfare Minister Caroline Gennez has announced plans to tackle false and misleading health information that is spread online, by funding an organisation to provide people with reliable, verified health advice.

This matters to all of us. When we search for health information about a symptom, a treatment or how to manage a condition, we deserve answers we can trust.

But misinformation that spreads fast online puts people at real risk. We have already seen the impact of this through falling vaccination rates across Europe.

We need more governments to follow Belgium's lead in challenging false information, investing in health literacy and making sure people can access reliable, science-based information.

ELF and the European Respiratory Society have been raising the alarm on this. Learn about our campaign to and : ersnet.org/advocacy/campaign-defend-science

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