ISSUE 26 - OCTOBER 2022

TOF: Get paid for what you are doing!

What? Really? No extra work? Just get paid for what I am doing anyway?

TOF: Almost!

How?  

TOF: Whenever you give a lecture, or you present a case in your group or during a board meeting where you discuss patients’ diagnostic or treatment options, in all of these situations consider whether this might be interesting for colleagues who are not such experts as you are in your field of Rare Diseases of the Respiratory System.

What do I have to do?

TOF: Get in contact with Elisabeth and propose to her including your above-mentioned activity in the ERN-LUNG academy educational material

And then?

TOF: If she accepts, she will send you an authorship contract. The author (not the hospital) will receive a remuneration of 600 to 1200€ for eCases presentations and eLectures resp.

That’s all?

TOF: You send us your recording of what you have done! And get paid!

This is a great offer to all Members and Affiliated Partners of ERN-LUNG. We can pay for your contributions and we can pay the young doctor or nurse or physiotherapist – we can pay any team member for contributions that fit into the ERN-LUNG Academy educational program. The content of a single contribution does not necessarily have to cover a broad spectrum of the disease, we will try to fill gaps by asking colleagues for specific contributions. But we want to lower the burden of preparing such content by having you record lectures or case presentations. This is a great opportunity especially for younger members of your team. So, don’t hesitate and just grab the slides of your last lecture or case presentation and get in contact with Elisabeth. We will be happy to receive a whole bunch of eLearning modules.

Best regards

TOF

The ERN-LUNG Academy has started it´s recruitment! Applications to be submitted by December 1st, 2022. For more information please have a look at our flyer or check out the video

2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension: Developed by the task force for the diagnosis and treatment of pulmonary hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Endorsed by the International Society for Heart and Lung Transplantation (ISHLT) and ERN-LUNG. Take a look at the new guidelines on Pulmonary Hypertension

The ERN project managers meeting, which is held on a regular basis, was conducted by Alexis Arzimanoglou, Michelle Battye and Diana Marinello where topics about grants agreement, FNLC and patient involvement in ERNs were brought to the table. Topics on patient involvement were also presented by Lenja Wiehe (EURORDIS).

Respifil, the French national network for rare respiratory diseases, held  its 7th annual conference on Sep 27th. Various issues (therapy, clinical research, education) were discussed in the historical surroundings of the Campus des Cordeliers of Sorbonne University. ERN-LUNG was there!

At the ERS congress held in Barcelona, Spain, the EARCO stakeholder board meeting also took place on the 5th of September. There were more than 60 participants, including the representatives from new countries and a good number of early career members. The meeting covered various topics such as the increase in recruitment in the international EARCO registry, analysis of the Spanish registry data, the publications, terms of reference and strategic planning. Various research proposals were also put forward.

The ERS held its annual congress in Barcelona on Sep 4-6th. This year’s Congress was the first with both in-person and online attendance and there was enthousiasm for both options. With more than 19,000 delegates around the world it was a great success.The programme this year offered hundreds of live and pre-recorded sessions and over 3,500 abstracts sharing the latest scientific and clinical data. In the field of rare respiratory diseases, it was the opportunity to organise symposia and also launch the 2022 ESC/ERS pulmonary hypertension guidelines endorsed by ERN-LUNG. ERS President Marc Humbert (also vice-coordinator of ERN-LUNG) stressed that the respiratory community had become stronger after almost 3 years of pandemic emergency. ERN-LUNG will actively contribute to the next ERS International Congress in Milan on Sep 9-13th, 2023.

We are pleased to announce that we have scheduled our next Annual Board Meeting (ABM) on 6th and 7th March 2023.                       

We decided to conduct this meeting face-to-face in Frankfurt with all the ERN-LUNG members in order to strengthen networking between the colleagues and members, provided the Pandemic does not force us to change our plans.

Please do SAVE THE DATE. We look forward to seeing you all in person again!

More meeting details, venue and agenda will follow in subsequent emails.

The Medical Steering Committee was held on Oct 5th. Reports from the Network Coordination Team, the Core Networks and the Functional Committees were the main topics. The Annual Board Meeting in March 2023 was also announced.

? Rare Disease Week

 ? March 6 & 7

? 10th International Meeting on Pulmonary RD and Orphan Drugs

 ? March 03 @ 8:00 - March 4 @ 17:00

? ERN-LUNG Annual Board Meeting (ABM)

 ? March 06 @ 10:00 - March 07 @ 17:00

➔ 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 (2022) so that it can be highlighted on the ERN-LUNG website

Take a look at the latest EU Funding Calls here: