ISSUE 37 - DECEMBER 2024

Welcome to the last edition of our newsletter for this year.

As the NCT is currrently very busy wrapping up some very fruitful projects of this year, we´re happy to give you an insight on some of our most recent achievements and updates 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.

Warm wishes for a prosperous and festive season.

Your ERN-LUNG Network Coordination Team

Dear Members of ERN-LUNG,

You are fantastic!
The following sequence of events is just an example of how members of ERN-LUNG are helping patients across Europe.

1^st Dec 2024, 8:43 - Email received from a desperate father of a 10-month-old boy with a suspected diagnosis of a rare lung disease.
1^st Dec 2024, 11:58 - First response by Network Coordination Team of ERN-LUNG with request of residence
1^st Dec 2024, 12:42 - Father gives the requested info
1^st Dec 2024, 19:04 - Expert reply by HH
1^st Dec 2024, 20:04 - Next expert reply by LD
1^st Dec 2024, 23:17 - Expert reply by NN
2^nd Dec 2024, 8:05 - Childhood Lung Transplant expert reply, summary of possible next steps

Less than 24 hours after first contact there was a first idea about which diagnosis might be the cause of the problems and an expert recommendation for next steps was communicated.

2^nd Dec 2024, 9:18 - Expert reply by MG; this expert was the closest to go to and the father had the recommended test started in his hospital.

Dec 2 to 9: ten further contacts
9^th Dec 2024, Email to the father: “…understanding that Prof. MG is now directly involved and that he will continue to be your direct contact, I propose you specifically and for the time being exclusively address any further info to him. As soon as he considers additional info should be discussed with other members of the network he will certainly propose to do so, and the respective members of our network will be happy to help. On the other hand, involving many experts a bit, will not really help but will keep the experts from helping where they could…”

Yes, we are here to help! ERN-LUNG helps, you are the ones who help! This is what the father wrote, and I include it here because it is meant for you:

“Thank you for your email and for your continued support during this challenging time. I truly appreciate the clarification regarding further communication and the need to focus on Prof. MG as our primary contact. I completely agree that concentrating the efforts will ensure the best use of everyone’s time and expertise. Please extend my gratitude to the entire team for their willingness to assist. We remain hopeful and are doing our best to stay positive during this season."

I can only echo the father’s words and let me also express my gratitude for your willingness and support – this makes me a little proud of you all!
Have a wonderful festive season and a perfect start into the New Year 2025!

All the best

Thomas

➔ 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.

• HaDEA Calls for Proposals on Health
• HaDEA Calls for Tenders on Health
• Horizon Europe calls for Funding on Health