ERN-LUNG - European Reference Network for rare respiratory diseases

30/10/2025

Don't forget to register for the BEAT-PCD Patient Conference 2025 which will be held online on Saturday, November 29, 2025 from 2:00 PM to 6:00 PM.
Find out more:

Join us for a virtual gathering of patients, caregivers, and healthcare professionals to learn, connect, and support one another in navigating life with Primary ciliary dyskinesia. Our conference will feature informative and interactive sessions and opportunities to engage with experts in the field.

20/10/2025

02/10/2025

The Wednesday special session "What can ERN-LUNG offer for the future?" at the presented key features of the network- including the Academy to train healthcare professionals in rare diseases and the CPMS 2.0 to allow specialists to collaborate on difficult patient cases -and discussed the potentials (and risks) of the use of AI in the field of rare respiratory diseases.

02/10/2025

ERN-LUNG Goes East: Romania joined our network!

It is with great pleasure to welcome our new supporting partner, “Dr. Victor Babeș” Clinical Hospital for Infectious and Pulmonary Diseases in Timișoara. It is an important milestone in our "Go East" project, because until now there was no healthcare provider from Romania in our network. This great achievement is the result of both parties' efforts, face to face and online meetings. As a first step the centre will join our interstitial lung disease and bronchiectasis core network, but discussions are ongoing to become a member in further disease areas. We are very much looking forward to future collaboration!

02/10/2025

ERN-LUNG's Network Coordination Team and patient representatives discussing updates on ongoing projects at the

02/10/2025

It is time again to beat the drum for our Academy! Please hand around our flyer, in your hospital environment and beyond, as non-ERN medical staff is explicitly invited. Applications are open now, and possible until December 1st, 2025. Thank you for your help to attract attention!
Check out our flyer here:https://ern-lung.eu/wp-content/uploads/2025/09/Flyer-ERN-LUNG-Academy-2026.pdf

29/09/2025

The is taking place from 27 September – 1 October 2025 at the and -Lung is very excited to join this event and is looking forward to connecting with many experts and patient representatives from around the world

29/09/2025

The is taking place from 27 September – 1 October 2025 at the and is very excited to join this event and is looking forward to connecting with many experts and patient representatives from around the world

26/09/2025

The latest Rare Barometer survey on your experiences with a rare or undiagnosed condition is now online!

This survey is open to all people living with a rare disease and undiagnosed condition and their close family members from any country in the world. It takes about 20 minutes to complete and closes on November 16, 2025.

It includes questions such as how people cope with daily stress, which support they can rely on, or how they manage to learn, work, and contribute to their community while living with a rare or undiagnosed condition. More information on the survey, including the questionnaire in English and the recording of the launch webinar can be found at: tiny.cc/RB-MH-info

25/09/2025

ERN-LUNG Goes East: Romania joined our network!

It is with great pleasure to welcome our new supporting partner, “Dr. Victor Babeș” Clinical Hospital for Infectious and Pulmonary Diseases in Timișoara. It is an important milestone in our "Go East" project, because until now there was no healthcare provider from Romania in our network. This great achievement is the result of both parties' efforts, face to face and online meetings. As a first step the centre will join our interstitial lung disease and bronchiectasis core network, but discussions are ongoing to become a member in further disease areas. We are very much looking forward to future collaboration!

16/09/2025

This Pulmonary Fibrosis Awareness Month, learn more about the challenges in clinical trials for pulmonary fibrosis in our recent Coffee Talk episode with Prof. Marlies Wijsenbeek and Aditya Patel ☕

Watch the episode here: https://bit.ly/4n4GMIl

16/09/2025

World Lung Day 2025: FIRS’ global campaigns for healthier lungs

On 25 September, the Forum of International Respiratory Societies (FIRS) marks World Lung Day under the theme Healthy Lungs, Healthy Life. This year, FIRS is spotlighting two major initiatives:

FIRS Lung Health Taskforce – a roadmap to improve prevention, diagnosis and treatment worldwide.
Improving Access to Inhaled Medicines – tackling barriers so patients everywhere can get the medicines they need.

Alongside these systemic efforts, FIRS urges individuals and communities to take simple, everyday steps to protect their lungs:

Everyday steps for lung health:
🫁 Breathe clean air
🚭 Stay smoke-free
👟 Keep active
💉 Stay up to date with vaccinations
🌿 Support climate action
🍎 Eat a balanced diet

FIRS President Professor Guy Marks:
"Healthy lungs are essential to healthy life. We are calling for action at both personal and systemic levels to ensure everyone can have good lung health."

Discover more here.