ERN-LUNG
NEWSLETTER

ISSUE 43 - JUNE 2026

Welcome to the June edition of our newsletter. Inside, you will find key updates on rare diseases and ERN-LUNG. Stay informed with the latest EU news and explore insights from our past, ongoing, and upcoming network projects. Discover the latest advancements, upcoming conferences, and key meetings shaping European respiratory health.
Should you have any questions regarding ERN-LUNG, please feel free to reach out to us.

Your ERN-LUNG Network Coordination Team (NCT)

Word from the coordinator

Successful networks understand that leadership is not about individuals; it is about stewardship. The strongest organizations plan for change before change becomes necessary. As ERN-LUNG approaches its second decade, we are doing exactly that.

In October 2027, with the start of the next funding period, Professor Marc Humbert, Paris, will assume the role of Coordinator of ERN-LUNG. At the same time, I will step into the role of Past Coordinator, while Professor Cormac McCarthy, Dublin, will become Coordinator-Elect. Together, this leadership structure is designed to ensure continuity, preserve institutional memory, and provide a clear pathway for the network's future development.

This transition comes at a time when ERN-LUNG is itself evolving. Over the coming years, the majority of coordination activities will gradually move from Frankfurt to Paris. Frankfurt will remain an important contributor to the network, but with a more focused role. At the same time, we are establishing a third coordination hub in Dublin, creating a leadership and management structure that better reflects the truly European nature of our network.

These changes are not administrative details. They are strategic decisions intended to strengthen ERN-LUNG for the long term. By distributing responsibilities across Paris, Frankfurt, and Dublin, we are building greater resilience, expanding capacity, and ensuring that expertise is shared rather than concentrated in a single location.

The mission of ERN-LUNG remains unchanged: improving the lives of people living with rare respiratory diseases through collaboration, innovation, and excellence in care. But sustaining that mission requires constant renewal. Networks that endure are those willing to adapt while remaining faithful to their purpose.

The transition planned for 2027 reflects that principle. It is not a change in direction, but an investment in continuity. By preparing today for the leadership of tomorrow, ERN-LUNG is positioning itself to remain a strong and trusted European partner for patients, healthcare providers, and researchers in the years ahead.

TOF Wagner, Coordinator of ERN-LUNG

 

News & webinars
Hungarian Respiratory Society Meeting in May
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The Hungarian Respiratory Society held its bi-annual meeting on 13-16 May in Balatonfüred, Hungary. Thanks to the efforts of Prof. Ildiko Horvath, current Secretary General of the European…
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8th edition of the IMPAHCT 2026
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This year was the 8th edition of the IMPAHCT which clear aim is to “bring together global experts to elevate care in pulmonary hypertension, IPF, and other ILDs”.…
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EU PFF Summit
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Every two years, EU-PFF hosts the European PF Patient Summit, inviting patients, experts, industry, clinicians and researchers to discuss, network and learn about the latest insights in Pulmonary…
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CPMS 2.0 update
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We decided during the Annual Board Meeting to weave together more closely the Functional Committee Cross Border Care (which has been taken over on that occasion by Adam…
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24th meeting of European Reference Networks (ERN) Coordination Group
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A highly productive two day programme of collaboration and strategic exchange is taking place in Luxembourg for the European Reference Networks (ERNs).Throughout the ERN Coordinators Meeting and the…
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Bridging the Pediatric-Adult Care Gap
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EURORDIS is launching a new webinar series, “Transition in Healthcare: Turning Recommendations into Practice.” Join expert speakers as they showcase real-world examples of moving patients smoothly from pediatric…
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European Commission Report Highlights Crucial Role of ERNs in Cross-Border Healthcare
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Published on May 21, 2026, the European Commission’s 2024 cross-border healthcare report and factsheet analyze patient mobility trends linked to European Reference Networks (ERNs). The findings indicate that…
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PCD news – First Proof of Activity from Inhaled mRNA Delivery Demonstrates Protein Expression and Functional Activity in the Airways of PCD Patients
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– Abstract selected for oral presentation at the American Thoracic Society International Conference 2026 – May 23, 2026 – The international PCD Clinical Trial Network (PCD CTN) played a…
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ERDERA Networking Support Scheme
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The ERDERA Networking Support Scheme (NSS) facilitates cross-border and interdisciplinary collaboration within the rare disease and rare cancer communities. This ongoing call provides funding of up to €30,000…
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ERNs special issue on OJRD – Call for contributions
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European Reference Networks (ERNs) connect 1,606 expert centers across Europe to harmonize care for rare and complex diseases through multidisciplinary collaboration and shared clinical guidelines. By utilizing the…
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ERN Transition Workshop
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From 27-28 February, a significant workshop took place in Ghent, Belgium, bringing together representatives from European Reference Networks (ERNs) and various experts to focus on the transition of…
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Together4RD releases final activity report
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The final activity report for the Together for Rare Diseases (Together4RD) initiative is now available, documenting the project’s efforts to facilitate collaboration between European Reference Networks (ERNs) and…
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Undiagnosed Day 2026 | Where diagnosis becomes hope: The power of collaboration and technology in rare diseases
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This session covers practical approaches to phenotyping and diagnosis in undiagnosed conditions. Key topics include defining next steps when a diagnosis is uncertain and strengthening collaborative pathways to improve care for undiagnosed…
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ERS Congress – Wednesday special with ERN-LUNG
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ERN-LUNG will be present during the ERS annual congress in Barcelona in September! We will have a booth with information material in the World village, and we will also…
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World Bronchiectasis Conference 2026
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The World Bronchiectasis Conference 2026 will take place on 24–27 June 2026 in Hannover, Germany, bringing together healthcare professionals, researchers, and scientists from across the world. The latest…
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2026 Call for Applications – Affiliated Partner within ERNs
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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…
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ERN-LUNG Academy – Update
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The 2026 Academy has started in January with 71 participants from 15 EU countries and 11 non-EU countries. We have for the first time one participant from Cyprus,…
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Events
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International CTEPH Conference 2026
ICC 2026 will take place in Warsaw, Poland from…
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Advancement of Treatments for Rare Diseases
The two-day event will focus on translating…
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Rare Barometer Survey Results Launch Webinar
EURORDIS Social Research Director Jessie Dubief…
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9th World Bronchiectasis Conference 2026
The scientific programme of the conference is…
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Inspired 2026
The International Society of Paediatric…
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Virtual Academy of Sarcoidosis
02 July, 2026 – 03 July, 2026 Online This…
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ERS – Respiratory channel
Mastering the new diagnostic pathway: the ERS/ATS clinical practice guideline for PCD
2 July, 2026 | Online 17:00-18:00 CEST Chair: Dr…
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ERS Cough Conference 2026
5-17 July, 2026 | London, United Kingdom…
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WASOG 2026
Porto, Portugal
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Global PCD Conference 2026
The first Global PCD Conference is scheduled…
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ELF Patient Organization Networking Day 2026
The annual ELF Patient Organisation Networking…
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ERS Congress 2026
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ERS Alpha-1 Antitrypsin Conference 2026
23-24 October, 2026 | Barcelona, Spain Organizing…
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World Orphan Drug Congress Europe 2026
26 October 2026 | Workshop Day 27-28 October…
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WHAT WE NEED FROM YOU

➔ 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.

FUNDING OPPORTUNITIES
  • 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
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ERN-LUNG Coordinating Center: University Hospital Frankfurt
Theodor-Stern-Kai 7 60596 Frankfurt am Main, Germany
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