ERN-LUNG - European Reference Network for rare respiratory diseases

29/09/2025

The is taking place from 27 September – 1 October 2025 at the and -Lung is very excited to join this event and is looking forward to connecting with many experts and patient representatives from around the world

29/09/2025

The is taking place from 27 September – 1 October 2025 at the and is very excited to join this event and is looking forward to connecting with many experts and patient representatives from around the world

26/09/2025

The latest Rare Barometer survey on your experiences with a rare or undiagnosed condition is now online!

This survey is open to all people living with a rare disease and undiagnosed condition and their close family members from any country in the world. It takes about 20 minutes to complete and closes on November 16, 2025.

It includes questions such as how people cope with daily stress, which support they can rely on, or how they manage to learn, work, and contribute to their community while living with a rare or undiagnosed condition. More information on the survey, including the questionnaire in English and the recording of the launch webinar can be found at: tiny.cc/RB-MH-info

25/09/2025

ERN-LUNG Goes East: Romania joined our network!

It is with great pleasure to welcome our new supporting partner, “Dr. Victor Babeș” Clinical Hospital for Infectious and Pulmonary Diseases in Timișoara. It is an important milestone in our "Go East" project, because until now there was no healthcare provider from Romania in our network. This great achievement is the result of both parties' efforts, face to face and online meetings. As a first step the centre will join our interstitial lung disease and bronchiectasis core network, but discussions are ongoing to become a member in further disease areas. We are very much looking forward to future collaboration!

16/09/2025

This Pulmonary Fibrosis Awareness Month, learn more about the challenges in clinical trials for pulmonary fibrosis in our recent Coffee Talk episode with Prof. Marlies Wijsenbeek and Aditya Patel ☕

Watch the episode here: https://bit.ly/4n4GMIl

16/09/2025

World Lung Day 2025: FIRS’ global campaigns for healthier lungs

On 25 September, the Forum of International Respiratory Societies (FIRS) marks World Lung Day under the theme Healthy Lungs, Healthy Life. This year, FIRS is spotlighting two major initiatives:

FIRS Lung Health Taskforce – a roadmap to improve prevention, diagnosis and treatment worldwide.
Improving Access to Inhaled Medicines – tackling barriers so patients everywhere can get the medicines they need.

Alongside these systemic efforts, FIRS urges individuals and communities to take simple, everyday steps to protect their lungs:

Everyday steps for lung health:
🫁 Breathe clean air
🚭 Stay smoke-free
👟 Keep active
💉 Stay up to date with vaccinations
🌿 Support climate action
🍎 Eat a balanced diet

FIRS President Professor Guy Marks:
"Healthy lungs are essential to healthy life. We are calling for action at both personal and systemic levels to ensure everyone can have good lung health."

Discover more here.

15/09/2025

The replay of yesterday’s ‘Journal Club – Cardiac comorbidity in cystic fibrosis: how common, how severe, how to respond’ is available now on the ERS Respiratory Channel: https://bit.ly/4oUnjea

12/09/2025

Call for Applications: 2026 EURORDIS Open Academy Schools
Applications are now open for the 2026 EURORDIS Open Academy Schools, a face-to-face programme offering high-quality training for rare disease patient advocates and early-career researchers (PhD candidates and up to two years post-PhD).
Two programmes are available:
Open Academy School on Medicines Research & Development
Open Academy School on Scientific Innovation & Translational Research
Dates: 25–28 May 2026
These schools provide invaluable knowledge and skills to drive forward rare disease research and advocacy.
Find out more and apply: https://openacademy.eurordis.org/open-academy-schools

08/09/2025

Get the latest TB vaccine updates with our upcoming ERS/UNITE4TB webinar: Panel discussion on tuberculosis vaccine – what can we expect in the near future?

This webinar will discuss ongoing clinical trials, efficacy challenges, potential timelines and more 🫁

Register now: https://bit.ly/3HXzCG3

08/09/2025

A new edition of “Navigating Rare Disease Research: Data, Ethics and AI in Europe” will follow suit

25/08/2025

Don´t miss the Wednesday special programme at the 2025!

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...