ERN-LUNG - European Reference Network for rare respiratory diseases

11/05/2026

We are working with the European Lung Foundation and European Respiratory Society to gather experiences of lung transplantation in Europe.

Two surveys have been launched as part of the ELF Chair’s Campaign, which aims to raise awareness, improve education and advocate for equal access to lung transplantation for people with severe lung conditions across Europe.

Patient carer survey
This is aimed at:
🫁 People who have received a lung transplant
🫁 People who have been referred, evaluated or are currently on the waiting list
💙 Family members and carers supporting someone through their transplant journey
🌍 Available in 13 languages with more on the way
🔗 https://europeanlung.org/en/get-involved/surveys/share-your-experience-of-lung-transplantation-in-europe/

➡️Please share this survey with patients in your network. You can share the link above directly, or share the flyers found in this folder: https://drive.google.com/drive/folders/1J2VDfbmeEAkAGTbkIM-hx04b-vr6L2ph?usp=sharing

Transplant centre survey
To help us build a clearer picture of current practice, identify gaps and inequalities and support future advocacy, education, and service improvement. If you are a representative of a transplant centre, please complete the survey below available in English: https://www.surveymonkey.com/r/RVQHB8J

By sharing your experience, you will help us build a clearer picture of lung transplantation across Europe, identify gaps and inequalities and strengthen future advocacy and service improvement.

Survey open until 18th May 2026.

20/04/2026

European Parliament draft report urges a binding EU rare disease action framework

A draft report from the European Parliament’s Committee on Public Health (SANT), spearheaded by MEP Nicolás González Casares, urges the European Commission to introduce a binding legislative framework for rare diseases. The proposal aims to address existing fragmentation and inequalities in diagnosis, treatment, research, and data infrastructure. Structured similarly to an EU Regulation, the framework comprises six pillars and advocates for centralized coordination, standardized indicators, and mandatory reporting. Additionally, the report seeks to strengthen European Reference Networks (ERNs) by improving their governance and ensuring their long-term integration into national healthcare systems.
Find out more: https://erdera.org/news/european-parliament-draft-report-urges-a-binding-eu-rare-disease-action-framework/?utm_source=Sarbacane&utm_medium=email&utm_campaign=ERDERA%20NEWSLETTER%20 #6

A legislative own initiative file in the Parliament’s new public health committee sets out what an EU “rare disease action framework” could look like — and why it could change how Europe measures progress for patients.

17/04/2026

2026 Call for Applications – Affiliated Partner within ERNs

Eligible Countries: Bulgaria, Cyprus, Croatia, Czechia, Estonia, Greece, Ireland, Latvia, Norway, Poland, Portugal, Romania, Slovenia, and Slovakia.
Application Limit: Eligible countries can submit up to three applications per missing ERN.
Key Objectives: Expand Coverage: Improve the geographic reach of ERN expertise across the EU and Norway.
Increase Access: Provide specialized care in regions or disease areas where full ERN membership is currently missing.
System Integration: Better integrate ERNs into national healthcare systems.
Knowledge Sharing: Support cross-border clinical collaboration and exchange.
Opening date: 13 April 2026
Deadline: 1 September 2026
Find out more:

2026 call for applications

25/03/2026

25/03/2026

Stephy Varghese T.'s presentation at ERN-LUNG's Annual Board Meeting (ABM) held in Paris offered a thoughtful reflection on how the meeting itself has evolved over the years. She focused on how the meetings have grown into a dynamic platform for strategic dialogue, cross-functional alignment, and long-term vision setting, highlighting how the board meeting has increasingly become a space not just to review results, but to challenge perspectives, foster collaboration, and shape the future direction of ERN-LUNG. Her insights underscored the value of these moments in bringing leadership together with clarity and purpose - making the annual board meeting not just a milestone event, but a key driver of ERN-LUNG's continued growth and transformation.

25/03/2026

At the recent ABM in Paris, Donata Eick had the opportunity to present on behalf of ERN-LUNG, highlighting the importance of transition and the continued need to build momentum across the network.

The session sparked strong engagement and reinforced a shared commitment to driving this work forward together. Donata also showcased key quality improvements achieved by ERN-LUNG over the past five years—demonstrating the network’s ongoing dedication to advancing care for patients with rare respiratory diseases.

An important part of the meeting was the discussion with members, where priorities for the next phase were defined through a collective vote. The agreed focus areas are:
- Advancing AI in rare diseases
- Strengthening collaboration on an Inter ERN scale
- ⁠continuing to expand an make patients the center of the network.

ERN LUNG remains committed to turning these priorities into meaningful action and impact for patients, clinicians, and the wider community.

25/03/2026

Gergely Meszaros JD, MSc presented the results of the Go East project, and also covered some aspects of the methodology. We discussed how we can overcome some of the difficulties as in a couple of cases on the last mile is missing to onboard an additional healthcare provider to our network.

25/03/2026

The ERN-LUNG Annual Board Meeting (ABM) in Paris was opened by Professor Thomas O.F. Wagner, who set the stage with an inspiring and insightful introduction for both new and long-standing members of the network.

He highlighted the origins and evolution of ERN-LUNG, reminding us of the vision behind its creation and the importance of continued collaboration across borders. His overview of the network reinforced our shared mission to improve care for patients with rare respiratory diseases.

Professor Wagner also reflected on what has been achieved so far—showcasing the progress made through strong partnerships, knowledge sharing, and a commitment to the project.

18/03/2026

ERN-LUNG's latest newsletter edition outlines key advancements and strategic initiatives for 2026 with the focus on enhancing care, research, and education for rare respiratory diseases including the BREATHeREGISTRY for rare diseases and a new genetics working group. Educational initiatives like the ERN-LUNG Academy 2026 alongside strategic focus on transition care, AI in research, and upcoming events like the annual board meeting in March 2026. For the full newsletter, visit

28/02/2026

https://www.facebook.com/share/v/1KGptcfgYv/

23/02/2026

Join the European Respiratory Society this March for the Academy of interstitial lung diseases!
This ERS course will provide updates on diagnostic procedures, specific diseases and treatment, as well as an opportunity for participants to present their own cases to leading experts in the field!
Learn more and register on the ERS website: https://www.ersnet.org/events/academy-of-interstitial-lung-diseases/