ERN-LUNG - European Reference Network for rare respiratory diseases

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/

19/02/2026

The first Global PCD Conference, jointly organized by the PCD Foundation, European Reference Network for Rare Respiratory Diseases (ERN-LUNG), and BEAT-PCD, will take place in Montreal, Canada, in August 2026. This conference series aims to consolidate previous international meetings into a single annual event to foster global collaboration and harmonize research and clinical care efforts. Abstract and case report submissions are due April 9, 2026. For more information, visit BEAT-PCD.

16/02/2026

Save the date!

📣 As part of the events and initiatives for Rare Disease Day 2026,
Centre Hospitalier de Luxembourg – TransplantChild Affiliated Partner – is hosting a morning of conferences organised by the Luxemburg National Coordination Hub of European Reference Networks.

💫 The event, open to the public, will focus on how clinical expertise, innovation and European networking in the field of rare diseases make Centre Hospitalier de Luxembourg at the patient’ service.

In particular, the programme will cover a broad spectrum of topics related to complex and rare conditions, including dermatological and respiratory disorders, autoimmune and paediatric uro-nephrological diseases, as well as liver disorders, rare forms of diabetes and inherited metabolic diseases, which fall under the scope of different ERNs. ERN-Skin ERN-LUNG - European Reference Network for rare respiratory diseases Rare Endo-ERN MetabERN and

The event will also present the feedback from the National Center of Genetics from the last years of experience in non-invasive prenatal testing and exome sequencing, and it will share updates on national coordination efforts in the field of rare diseases.

🧡💙 A valuable opportunity to showcase how European Reference Networks and cross-border collaboration strengthen diagnosis, care pathways and outcomes for patients living with rare diseases.

📍 Centre Hospitalier de Luxembourg Auditorium, Luxembourg
🗓️ 28 February 2026 | 9:00-13.00 CET

16/02/2026

Your Data Matters – Make it Count

The BREATHeREGISTRY is more than a database for populations with rare respiratory diseases— it’s a movement powered by people who want to change the future of respiratory health. When you share your experiences, you help illuminate what numbers alone can’t capture: the real stories, challenges, and triumphs behind every breath. Your participation fuels research, accelerates innovation, and brings us closer to better treatments and brighter outcomes for all. Your Data Matters – Make It Count.

To learn more, go to the link: https://ern-lung.eu/patient-registry/breatheregistry/
To register patients (also undiagnosed patients) with rare respiratory diseases: https://ern-lung-population-registry.mig-frankfurt.de/login.xhtml

The BREATHeREGISTRY is a European registry that records as many people as possible who are affected by rare respiratory diseases. Patients can register in the system and enter their data. Experts for specific rare diseases can contact patients via e-mail, if they are appropriate for other disease sp...

29/01/2026

💙 Au CPLF 2026, les associations de patients respiratoires rares sont au rendez-vous

Du 30 janvier au 1er février 2026, RespiFil participera au Congrès de Pneumologie de Langue Française (CPLF), au Grand Palais de Lille, aux côtés de ses associations de patients partenaires.

👉 Même si ce congrès s’adresse avant tout aux professionnels de santé, il joue un rôle essentiel pour faire avancer la prise en charge des patients atteints de maladies respiratoires rares.

🤝 Les associations de patients Association HTaPFrance Mycobactéries Non Tuberculeuses MNT - Association MNT Mon Poumon Mon Air ADCP Association Dyskinésie Ciliaire Primitive Société de Pneumologie de Langue Française - SPLF Association Coeur Couleur Vaincre la Papillomatose - Vaincre PRR seront présentes sur le stand RespiFil pour rappeler l’importance de la voix des patients, des parcours de vie et des besoins du quotidien.

🛠️ À travers ses actions, RespiFil développe des outils concrets qui contribuent à améliorer le diagnostic, le suivi et la coordination des soins :
• Protocoles Nationaux de Diagnostic et de Soins (PNDS)
• Cartes d’urgence, pour une meilleure prise en charge en situation aiguë
• Programmes d’Éducation Thérapeutique du Patient (ETP)
• Centres de référence et de compétence spécialisés
• Dispositifs d’accompagnement tout au long du parcours de soins

💬 Derrière chaque outil, il y a un objectif clair :
améliorer la qualité de vie, sécuriser les parcours de soins et mieux accompagner les patients et leurs proches.

✨ Votre prise en charge progresse aussi grâce à l’engagement des associations, des soignants et de la recherche.

📍 CPLF 2026
🗓️ 30 janvier au 1er février 2026 – Grand Palais de Lille


Association Fibroses Pulmonaires France
Société d'Imagerie Thoracique - SIT Fondation du Souffle AFSOndine ERN-LUNG - European Reference Network for rare respiratory diseases France Lymphangioléiomyomatose - FLAM AFPIE - Association Française des Pneumopathies Interstitielles de l'Enfant Ffaair - Fédération des Insuffisants Respiratoires Association Histiocytose France Telomero Asso ADAAT Alpha1-France Association des déficitaires en Alpha-1 antitrypsine NEHI France - Association de familles de patients atteints de NEHI