ERN-LUNG - European Reference Network for rare respiratory diseases

20/06/2025

Have your say in rare disease research!
ERDERA has launched a new online survey to explore how rare disease patient
organisations can contribute to publicly funded research.
This will help us understand what’s working well – and what could be better –
when patients are involved in shaping research that affects their lives.
Co-designed with patient organisations
Confidential
Open until mid-July
Take the survey: https://shorturl.at/ePVuL
Learn more: https://shorturl.at/c03db
Together, we can improve patient engagement in rare disease research!

ERDERA’s patient-engagement working group has opened an online survey to gauge how rare-disease patient organisations experience their role in publicly funded research, including projects financed under ERDERA’s predecessors, EJPRD and the E-Rare schemes. The questionnaire—already available he...

16/06/2025

BEAT-PCD Annual Research Meeting - Registration now open!
We’re pleased to announce that the Beat-PCD Annual Research Meeting will take place on 26th September 2025 in Amsterdam, The Netherlands, just ahead of the ERS Congress.
This annual event brings together researchers, clinicians, and healthcare professionals focused on Primary Ciliary Dyskinesia (PCD) – a rare genetic disease affecting respiratory health. Organised by BEAT-PCD and ERN-Lung, the meeting offers a unique platform for sharing the latest advances in PCD research, from basic science to clinical care.
Registration for the PCD annual research meeting in Amsterdam is now open: https://lena.events/2025/beat-pcd/
Sessions will include:
Clinical trial results
Keynote speakers
The new ERS/ATS diagnostic guideline
PCD management consensus statement
The best of PCD in the ERJ
Patient perspectives
Early career member talks
And more….

04/06/2025

🚀 ERDERA launches the Networking Support Scheme! 🚀

We're excited to announce the launch of the Networking Support Scheme — a funding initiative designed to foster knowledge exchange on rare diseases and rare cancers across Europe. 🌍

👉 What is the aim?
✅ To promote the exchange of scientific knowledge
✅ To empower underrepresented countries to join and contribute to rare disease and rare cancers research

👉 Who is it for?
Clinicians, researchers, patient advocacy organisations & research managers working in or building new or expanding research networks.

🗓 Applications will be open on a continuous basis – collected every 6 months, starting 7 October 2025.

Let’s connect, collaborate and accelerate innovation in rare disease research.

👉 Learn more: https://loom.ly/Y-zY0og

04/06/2025

ERS was invited to attend today’s ‘exchange of views’ in the EU Parliament to provide science-backed data and expert knowledge on the topic of lung health and COPD to the Parliament’s SANT (public health) Committee. Such exchanges are essential to support MEPs in the work they do on this important topic.

Find out more: https://bit.ly/4jAluPM

27/05/2025

Why not take advantage of our range of skills workshops at the ERS Congress 2025?

The workshops offer the chance to explore a variety of specialisms including thoracic ultrasound basic principles, cardiopulmonary exercise testing and much more led by experts in the field.

Book your place as part of the congress registration form. See the full list of options: https://bit.ly/4kmvA7H

27/05/2025

On 24 May 2025, the Seventy-eighth World Health Assembly (WHA78) voted unanimously for the resolution “Rare diseases: a global health priority for equity and inclusion,” the first time the World Health Organization has formally elevated rare diseases to the top tier of its agenda. The text urges...

12/05/2025

12/05/2025

👩‍⚕️👩‍⚕️👩‍⚕️ Les 3 Mousquetaires de Dijon 🏥
Trois infirmières engagées à l’hôpital François Mitterrand 💙
Elles sont là à chaque étape :
💬 avant même le diagnostic
🧪 pendant l’annonce
📞 disponibles, à l’écoute, au bout du fil
🤝 présentes pour rassurer, adapter, coordonner
🔗 Le lien entre les patients et les professionnels de santé

🎥 Leur témoignage est à découvrir ici : 👎🏻 https://www.youtube.com/watch?v=yucSBSi4pZY

🙏 Merci à elles, et à toutes les infirmières, pour leur engagement 💐

12/05/2025

Voting is now open for the ERS Leadership Elections 2025!

Learn more about Prof. Zorana Andersen and Prof. Jonathan Grigg – the candidates for Advocacy Council Chair: https://bit.ly/3FdR4oe

The elections provide ERS members with the opportunity to have their say in the development of the Society, with voting open for the following positions:

🗳️ ERS Vice President
🗳️ Advocacy Council Chair
🗳️ Education Council Chair
🗳️ Publications Committee Chair

Voting closes at 23:59 CEST on Sunday 22 June, 2025.

ERS members can visit the 'Elections' tab on myERS to vote: https://bit.ly/3Sbht96

12/05/2025

📣 Calling Experts from Underrepresented Countries! 📣

ERDERA is expanding its pool of specialists and is seeking experts from underrepresented countries to join our network! 🌍

Experts in our pool are invited to:
✅ Contribute to ERDERA expert activities and panels
✅ Access exclusive networking opportunities
✅ Stay updated on funding, services, training, and educational programmes

List of ERDERA underrepresented countries🌍: Bulgaria, Cyprus, Czechia, Estonia, Greece, Georgia, Hungary, Ireland, Latvia, Lithuania, Morocco, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Türkiye.
Interested? 👉 Help us learn more about your expertise by filling in this short form: https://forms.office.com/e/3u9akmHytq
Don’t miss this opportunity to connect, contribute, and grow with a dynamic international community! 💡
📢 Help us spread the word! Tag or share with those who might be interested.

05/05/2025

Today is 🫀

Pulmonary hypertension is a complex and under-diagnosed condition affecting the pulmonary blood vessels, causing the heart to need to work harder.

To expand your knowledge, register for the ERS Academy of pulmonary hypertension taking place in Amsterdam, Netherlands from 20-21 November 📆

Register now: https://bit.ly/41C3pey