ERN-LUNG - European Reference Network for rare respiratory diseases

22/01/2026

✨ Belle année 2026 avec RespiFil ! ✨
Nous sommes heureux de vous présenter la nouvelle édition de la newsletter RespiFil, placée sous le signe du partage, de la recherche et de l’engagement collectif au service des maladies respiratoires rares.
🔎 Au sommaire de ce numéro :
- le bulletin de recherche ERS 2025
- la parution de 2 nouveaux PNDS
- l’annonce des lauréats des appels à projets PNDS et ETP 2025
- l’arrivée du Dr Sophie Yavordios au sein de RespiFil
- les vidéos des formations aux PID et journées de l’hypertension pulmonaire
- nos partenariats 2026 en faveur des patients
- l’agenda des RCP, des événements scientifiques et associatifs

📍 Nous aurons le plaisir de vous retrouver au CPLF à Lille (30 janvier – 1er février) sur notre stand M, aux côtés de nos associations partenaires.

👉 Découvrez la newsletter complète : https://mailchi.mp/aphp/newsletter-respifil-n32-janvier-2026

Merci à toutes celles et ceux qui font vivre la filière RespiFil au quotidien.
Prenez soin de votre souffle 🌬️



Association HTaPFrance Mycobactéries Non Tuberculeuses MNT - Association MNT Mon Poumon Mon Air ADCP Association Dyskinésie Ciliaire Primitive Association Fibroses Pulmonaires France Vaincre la Papillomatose - Vaincre PRR Société de Pneumologie de Langue Française - SPLF Société d'Imagerie Thoracique - SIT Association Coeur Couleur 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 Association Siel Bleu Telomero Asso ADAAT Alpha1-France Association des déficitaires en Alpha-1 antitrypsine NEHI France - Association de familles de patients atteints de NEHI

22/01/2026

ERNICA Research Collaboration Webinar coming up in February

On Thursday, 19 February 2026 (from 4-5 PM) ERNICA will be hosting a webinar on an important topic: ''Respiratory Burden in Esophageal Atresia: What We Miss - And How We Can Do Better''.
Patients with EA often experience a substantial and underestimated respiratory burden, significantly affecting quality of life. This webinar will explore respiratory morbidity, tracheomalacia, and new insights from the Danish TRALULALA initiative, including preliminary findings and the patient perspective.
Discover new insights and best practices for managing this condition and register at: 27199a1a-0cfc-44a7-b99f-77fd7572eac2@526638ba-6af3-4b0f-a532-a1a511f4ac80" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/27199a1a-0cfc-44a7-b99f-77fd7572eac2@526638ba-6af3-4b0f-a532-a1a511f4ac80

Clinicians, researchers, patients, and anyone interested in this important topic are welcome to join the webinar.

Microsoft Virtual Events Powered by Teams

16/01/2026

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients

How does Geography and Aetiology impact Pulmonary Hypertension?
We are pleased to share a new study affiliated with ERN-LUNG highlighting findings from the Pulmonary Hypertension Global Patient Survey (PH GPS).
Because the experience of living with PH varies greatly depending on where a patient lives and their specific diagnosis, this multidisciplinary study captures global patient perspectives on:
✅ Healthcare provision
✅ Self-monitoring
✅ Research priorities
Collaboratively designed with patients and experts, these insights are vital to driving better, more personalized healthcare improvements worldwide.
📖 Read the full study here: https://publications.ersnet.org/content/erjor/11/6/00297-2025

12/01/2026

Call for Applications: Data, Ethics and AI training
Applications are now open for the 2026 Data, Ethics and AI training developed by EURORDIS and ERDERA, offering high-quality training for rare disease patient advocates and early-career researchers (PhD candidates and up to two years post-PhD).
This training has been developed in response to the growing need for advocates and researchers to understand and navigate the complexities of data management, ethical considerations, and the role of AI in rare disease research across Europe.
The online part of the training will run from March to July 2026, followed by the in-person sessions on 14–15 September 2026 in Barcelona. Applications close on 2 February 2026.
📅 Find out more and apply: https://openacademy.eurordis.org/data-ethics-ai-training/

Applications open soon Get ready for the Data, Ethics and AI training! The online part of the training will run from March to July 2026, followed by the in-person sessions […]

12/01/2026

👉
Call for Poster Abstracts Submissions
Poster abstract submissions for the ECRD 2026 are now open until 6 March 2026.
Open to patient groups, academics, healthcare professionals and all other interested parties having conducted research or studies on rare diseases or public health projects.
Find out more: https://www.rare-diseases.eu/posters/

08/01/2026

🌍 How does Geography and Aetiology impact Pulmonary Hypertension?
We are pleased to share a new study affiliated with , highlighting findings from the Pulmonary Hypertension Global Patient Survey (PH GPS).
Because the experience of living with PH varies greatly depending on where a patient lives and their specific diagnosis, this multidisciplinary study captures global patient perspectives on:
✅ Healthcare provision
✅ Self-monitoring
✅ Research priorities
Collaboratively designed with patients and experts, these insights are vital to driving better, more personalized healthcare improvements worldwide.
📖 Read the full study here: https://publications.ersnet.org/content/erjor/11/6/00297-2025

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23/12/2025

Curious about what we've been up to? Our latest newsletter edition is packed with insights on past, ongoing, and upcoming activities, webinars, and events. Stay in the loop and subscribe today: https://ern-lung.eu/?na=view&id=34

23/12/2025

👉 Conference Registration

We are pleased to announce that registration for ECRD 2026 is now open to the public! Participants who register before 26 February 2026 will benefit from our exclusive Early-Bird rates.

This edition of ECRD will engage patients, policymakers, clinicians, researchers and industry in a community-led effort to co-develop an EU Action Plan (or Strategic Framework) for Rare Diseases — a collective exercise in “planning for a Plan.”

Together, ECRD 2026 will lay the foundations for a European Blueprint for Rare Diseases:
🔹 Consolidating existing initiatives
🔹 Identifying gaps and unmet needs
🔹 Defining concrete steps to accelerate progress

Learn more about the six key conference tracks and view the Programme at a Glance for an overview of the conference schedule here:
https://www.rare-diseases.eu/programme-2026/

👉 Register here and benefit from early-bird fees. Secure your place at ECRD now: https://www.rare-diseases.eu/register/

Register now for the 13th European Conference on Rare Diseases and Orphan Products! The ECRD is recognised globally as the largest, patient-led rare disease policy event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape goal-driven rare disease p...

09/12/2025

ERN-LUNG New Working Group Launch

We are launching a new Genetics Working Group, co-led by David Montani (Hôpital Bicêtre, AP HP, Paris) and Raphaël Borie (Hôpital Bichat, AP HP, Paris).
The kick-off meeting will take place on 10 December 2025 at 15:30 CET. This open discussion will map expertise across the network and define actionable goals to advance genetics in the diagnosis and management of rare lung diseases.
Colleagues with experience or interest in genetics, across all core networks, are warmly invited to join and contribute. If you would like to join the meeting, or join the mailing list for future meetings, please contact: info@ern-lung.eu

09/12/2025

Join the European Respiratory Society (ERS) and European Reference Network (ERN-LUNG) for this
upcoming educational course, the Virtual school on rare lung diseases.
This course will take place online from 21-22 January, 2026 and will provide an overview on the
diagnosis and treatment of rare lung diseases such as cystic fibrosis, pulmonary hypertension and
more.
Participants will also have the opportunity to submit their own case presentations for discussion
during the course.
Find out more and register on the ERS website: https://channel.ersnet.org/media-114630-virtual-
school-on-rare-lung-diseases-2026

VIEW PROGRAMME VIEW LIVE REGISTER NOW   In collaboration with ERN-LUNG21-22 January, 2026 | Online Organisers: M. Kreuter, M. Wijsenbeek, M. Humbert, V. Cottin Faculty: C. Benden, E. Bendstrup, K. Buschulte, J. Cadranel, J. Chalmers, V. Cottin, M. Delcroix, R. Diesler, I. Fajac, M. Griese, A. Gschw...

04/12/2025

The European Commission has published the first-ever Continuous Monitoring Report for the ERNs, confirming
a 160% increase in new patients referred to ERN centres between 2018 and 2024 — clear evidence of how this
EU infrastructure strengthens Europe’s health capacity and resilience. The report presents detailed indicators
across seven core areas, including clinical activity, guidelines, registries, training and cross-border collaboration,
reflecting the 2023 & 2024 monitoring cycles.
ERNs connect 1,600+ specialised units in 375 hospitals, creating a single pool of rare disease expertise no
country could build alone. An estimated 30 million EU citizens are living with a rare disease. That& #39;s a huge
challenge, and ERNs are working together to make sure everyone gets the specialised care they need.
The report documents over 2,100 virtual CPMS consultations, delivering expert, multidisciplinary advice across
borders so patients can access specialist input without the need to travel.
ERNs demonstrate the power of European cooperation, strengthening health resilience, supporting clinical
excellence, and improving access to expertise for rare disease patients across all Member States.