ISSUE 40 - OCTOBER 2025

Welcome to the newest edition of our quarterly newsletter.

We are happy to share some of our most recent achievements and updates with you and as ever, give you an overview of interesting events coming up.

We hope you enjoy this newsletter issue and in case you have any questions, please do not hesitate to contact the ERN-LUNG Network Coordination Team.

Your ERN-LUNG Network Coordination Team

Two ERNs working together to raise awareness for a congenital malformation which can affect the lung, does this exist? Yes it does, and it was ERNICA (the ERN for rare inherited and congenital digestive and gastroentestinal anomalies) and ERN-LUNG who did this. To start with the beginning, it was one very tenacious patient representative who raised the issue of Esophageal Atresia patients developing Bronchiectasis. She particularly insisted that, due to little knowledge, these patients were treated for asthma, which is not a proper response.  For this reason, the ERN-LUNG's ORLD (Other rare lung diseases) Core Network organized several meetings with the responsible people at ERNICA,  to underline the causality and to propose treatment approaches. This procedure led to a paper on Care recommandations for non-specialists. You can find it here. We are now looking for a wide as possible dissemination. Do not hesitate to send it to clinicians around you. Sharing knowledge is what keeps us running!

➔ Let us know if you are participating in any conference where you will be presenting ERN activities and results

➔ Let us know if you have published anything recently (2025) so that it can be highlighted on the ERN-LUNG website; 

Any publications, clinical trials or guidelines arising from the collaborative work of ERN-LUNG members as major contributors  (at least 2 HCPs from at least 2 Member States) linked to ERN activities, are encouraged to mention ERNs either in the acknowledgement section or in the authors’ affiliation, using e.g.  “This work is generated within the European Reference Network for Rare Respiratory Diseases (ERN-LUNG)” or “This work is supported by the ERN for Rare Respiratory Diseases and Complex Conditions (ERN-LUNG)”. If the support is not financial, “(non-financially)” can be added in brackets after the word “supported” for additional clarification. Please keep us informed of your research output so that we may publish it on our website.

• Horizon Europe Calls for Funding on Health
• HaDEA Calls for Proposals on Health
• HaDEA Calls for Tenders on Health
• European Rare Diseases Research Alliance (ERDERA) calls