ERN-LUNG
NEWSLETTER

ISSUE 42 - MARCH 2026

A warm welcome to our March edition of the newsletter, which is packed with information about rare diseases and ERN-LUNG. Stay informed about the latest advancements and opportunities in respiratory health across Europe.

We are delighted to host our Annual Board Meeting (ABM) in Paris on March 23 and 24. Over these two days, we will provide a platform for our members to share their latest activities, navigate current challenges, and shape our collective aspirations for the future. With 116 participants already registered, we look forward to a vibrant exchange between clinicians and patient representatives.

Your ERN-LUNG Network Coordination Team (NCT)

Word from the coordinator

To Be Among the Best

Most of us juggle more roles than we care to count.

In any given week, I serve as the Coordinator of ERN-LUNG. I am also a physician caring for my patients, a manager overseeing several projects — some small, some rather large — and I am head of a dedicated group of doctors trying to solve the puzzles of patients whose diseases remain undiagnosed. And there are, inevitably, many other responsibilities that come with the territory.

Some of these roles I chose. Others simply arrive — and prove difficult to decline.

One of the less appealing tasks is preparing medical expert reports for courts or health authorities. It is the kind of assignment that appears every so often and demands attention whether one welcomes it or not.

This week was one of those times.

I was asked to submit an expert opinion on aspects of new treatments for pulmonary arterial hypertension (PAH). You might argue — as I did — that this subject is not exactly my area of expertise. That argument, however, did not carry much weight. The report still had to be written.

So I began reading.

And almost immediately I encountered a familiar name: Humbert et al., 2022. Marc Humbert — Vice Coordinator of ERN-LUNG and Core Network Lead — appears prominently in the field, including as a lead author of the 2022 ESC/ERS guidelines endorsed by ERN-LUNG.

As I continued through the literature to be cited in my report, something became increasingly clear. Again and again, the authors were colleagues actively involved in ERN-LUNG.

The realization was striking: The leading experts in this field are part of our network.

That is my first point.

The second is that this is not unique to pulmonary hypertension. Across many areas of rare respiratory diseases, the same pattern emerges. The European experts — the people shaping research, defining standards and writing the key publications — are the very people who make up ERN-LUNG.

In other words, each of us is working within a network that includes some of the best specialists in the world.

Yet it is easy to overlook that fact. Most days we are simply trying to keep many professional balls in the air at once.

But when we meet in Paris later this month, take a moment to look around. The people in that room will include many of those whose work defines the field of rare respiratory diseases.

I am proud to be part of this network.

And I look forward to seeing you there.

News & webinars
ERN-LUNG Academy – Update
ERN-Lung Academy
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,…
Read more...
Transition in Rare Diseases Workshop
Photo
This past weekend in Ghent, ERN-LUNG participated in the first ERN-wide workshop on Healthcare Transition in Rare Diseases. The event, excellently organised by ERN-Rare Liver, brought together participants…
Read more...
Global PCD Conference 2026
Photo
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…
Read more...
Patient Partnership Good Practice Challenge 2025
Photo
The 2025 Patient Partnership Challenge officially announced its winners, honoring exceptional collaborations between patient representatives and healthcare professionals within European Reference Networks (ERNs) and we are happy to announce that…
Read more...
The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients
Photo
🌍 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…
Read more...
High-Level Meeting on the European Research and Innovation Ecosystem for Rare Diseases
Photo
The High-level meeting „HLM rare 2025“ was held in Brussels from 9 to 11 December 2025 and was hosted by the European Reference Networks, MEP Vytenis Andriukaitis, and…
Read more...
New ERN-LUNG Member Activity Tool (LUNG-MAP)
Photo
We have replaced the previous LUNG-MAP format with a new automated tool which was developed to simplify the data collection process. The new LUNG-MAP is available on our…
Read more...
ECRD 2026
Photo
👉 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…
Read more...
2nd International Clinical Research Network 9-10th December 2025
Photo
The 2nd International Clinical Research Network conducted by ERDERA, IRDiRC and Rare diseases International was held on 9 and 10th December 2025 in Marsilius College in Heidelberg. The…
Read more...
ERN-LUNG Genetics Working Group Launch
Photo
The Genetics Working Group kicked off on the 10th of December with a well-attended online meeting. More than 30 colleagues from across Europe joined to share their expertise…
Read more...
Events
Photo
ERS Lung Science Conference 2026
Multiscale multiomics to dissect lung diseases…
Read more
Photo
ERN-LUNG Annual Board Meeting (ABM) 2026
We are delighted to host our Annual Board Meeting…
Read more
Photo
ERS Academy of interstitial lung diseases
25–27 March, 2026 – Mainz, Germany…
Read more
Photo
5th National Congress on Sarcoidosis Diagnosis and Treatment
17-18 April 2026 The ACSI (Friends Against…
Read more
Photo
Rare Disease Symposium “The Translational Science of Rare Diseases – From Rare to Care V”
Symposium on “The Translational Science of Rare…
Read more
Photo
4th European Pulmonary Fibrosis Patient Summit 2026
Save the Date – the 4th EU-PFF Summit is…
Read more
Photo
RDD 2026 – Respiratory Drug Delivery Conference
Respiratory Drug Delivery (RDD®) 2026 will be…
Read more
Photo
International Drug Repurposing Conference 2026
12-13 May 2026
Read more
Photo
ATS International Conference 2026
Friday, May 15 — Wednesday, May 20 Orange County…
Read more
Photo
ERDERA/EURORDIS open academy schools 2026
The 2026 Open Academy Schools will take place in…
Read more
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
Modify your subscription   |   View online
ERN-LUNG Coordinating Center: University Hospital Frankfurt
Theodor-Stern-Kai 7 60596 Frankfurt am Main, Germany
Copyright 2021 ern-lung.eu | All Rights Reserved
facebook  twitter  linkedin