ERN-LUNG - European Reference Network for rare respiratory diseases

14/11/2025

ECRD Rare Diseases in a changing & competitive Europe 2026

Save the Date for the official conference days: 3–4 June 2026

For your information, on 2 June 2026, we will also be holding a Pre-Conference Workshop, which will focus on drafting a roadmap for the future of rare disease policy, as well as our Council of National Alliances Meeting (for National Alliances representatives only). Please note that the Workshop will be open to a limited number of participants - further details will be shared soon. For now, we kindly ask you to focus all communications on the conference days: 3-4 June.

👉 Call for Poster Abstracts Submissions

Open to patient groups, academics, healthcare professionals and all other interested parties having conducted research or studies on rare diseases or public health projects.

Detailed information about guidelines and criteria can also be found here: (https://www.rare-diseases.eu/posters/).

Public registration for ECRD 2026 will open in December 2025. At that time, we will be sharing further details on the conference programme.

In the meantime, you can already take a look at an overview of the scope of our conference tracks here: https://www.rare-diseases.eu/programme-2026/

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