ISSUE 38 - MARCH 2025

Welcome to the newest edition of our quarterly newsletter.

We are happy to share some of our most recent achievements and updates with you and as ever, give you an overview of interesting events coming up.

We hope you enjoy this newsletter issue and in case you have any questions, please do not hesitate to contact the ERN-LUNG Network Coordination Team.

Your ERN-LUNG Network Coordination Team

Dear All,

Time flies… I can clearly recall that in 2017 spring we celebrated the official launch of ERNs in Vilnius and currently we are busy with the organization of our 9th Annual Board Meeting. More than 120 delegates already registered and there is a great curiosity in the air as – following 8 years – the venue will be changed from Frankfurt to Paris following the transition of the coordinating centre.

This edition of our newsletter provides you with a great variety of articles you can deep dive in.

The first phase of ERN’s re-evaluation is completed and out of 836 healthcare professionals from 24 ERNs 88% received satisfactory result. Currently the independent evaluation body is reaching out to the healthcare providers for audit dates, so be prepared for the next phase.

We collected some key facts for you about the new EU two-level health technology assessment procedure which – after years of preparation – came into force this January for oncology and advanced therapy medicinal products (ATMPs).

You can learn some interesting data and information from the various factsheets published by the European Commission. Do you know that around 80% of rare diseases are of genetic origin and 70% already start in childhood? 

We are continually building on your valuable input in various projects and nicely progressing in the undiagnosed working group, the LAM working group and the patient reported outcome (PRO) functional committee. Please keep up your dedication!

The 2025 was not a leap-year and the rarest day of the 29^th of February could not be used for marking the Rare Disease Day, but we did not lack enthusiasm and interest towards the series of events and actions to celebrate the rare disease patient community worldwide. Ample social media posts, the colouring of public buildings, in-person and online meetings were a clear testament that patients living with rare and complex conditions are not left alone and behind.   

Don’t miss the upcoming events and funding opportunities sections of our newsletter where you can find both online and in-person opportunities.

Let’s conclude this newsletter with a heads-up on our academy program: this year we welcome the most participants, 56 attendees in the program since the launch!

Gergely Meszaros

Project manager | ERN-Lung

➔ 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 (2024) 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.

• 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