ERN-LUNG
NEWSLETTER

ISSUE 30 - JULY 2023

Welcome to the latest (summer)edition of the ERN-LUNG newsletter.

You can find information on past, ongoing and future activities within the ERN-LUNG coordination team, as well as collaborative work, general ERN topics and rare disease news. Last but not least, we have a summary of interesting events coming up in near future. 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.

Kind regards. Have a wonderful summer!

Your ERN-LUNG Network Coordination Team

Word from the Coordinator

A strong network coordination team is not only ‘nice to have’, it is fundamentally important. The coordinator and network partners rely on this team for seamless communication and efficient collaboration. A fundamental principle of networking is that there is always someone within the network who possesses superior knowledge or expertise. In the case of ERN-LUNG, we are fortunate to have a fantastic Network Coordination Team that the coordinator can trust and all members and partners of ERN-LUNG are aware that there is always someone who will help.

Change of Coordinator – no change of Coordinator

Initially, we believed that changing the coordinator would be a good idea, especially since Marc Humbert was willing to step-up from the position of the Vice-Coordinator. With his extensive global connections and strong foundations in the French System of Healthcare for Rare Diseases, his important role within the European Respiratory Society, and his belief in the Idea of ERN-LUNG, no question, he would provide a great opportunity to infuse ERN-LUNG with a fresh perspective and momentum.

However, after careful consideration, we have decided against switching the roles of the Coordinator and the Vice-Coordinator for several reasons. One of the important factors influencing this decision is the desire to maintain the excellent collaboration and coordination within the Coordinator's Hospital Administration, which seems to be an important contributor to running such a big network smoothly. The Frankfurt University Hospital Administration has shown to be flexible and understanding the specific stumbling blocks which funding by the European Commission may have as a surprise. We recognize the value of the current structure and believe it is in the best interest of ERN-LUNG to preserve this successful co-working space for the Network coordination team. We think that keeping the structures of the network coordination and the hospital unchanged will increase the chances for creative input coming from the Vice-Coordinator.

We, the Network Coordination Team, will keep him safe from administrative and financial issues and thus we hope ERN-LUNG will make the best from having Marc Humbert being so enthusiastic for ERN-LUNG.

In conclusion, while the idea of introducing a new coordinator was initially seen as an opportunity for growth, we have chosen to maintain the existing roles in the attempt not to jeopardize the Network Coordination Team utilizing the background of the Frankfurt University Hospital. This will allow for the effective continuation of collaboration demonstrated by the current situation. By this we think to set the stage for new ideas and input coming from the Vice Coordinator and from all of the members and partners of ERN-LUNG.

We have a fantastic Network Coordination Team

When sitting down to write this “Coordinator’s word” I planned to sing a praise song of the Network Coordination Team, because they deserve it. I am not good at such tasks. So, please, take it as my public compliment and ‘thank you’ to enthusiastic people who make ERN-LUNG their business and make it flourish. Marc and I, we both know ERN-LUNG would not be possible without them.

Evaluation – no Evaluation

We all have spent quite some time with evaluation – and some still are working on their improvement plans. I will not add much more on this topic, but we all have to be aware of the fact, that after evaluation is before evaluation. But you can relax, this will not happen every year, the next external evaluation will be after another 4 years!

I wish you a very nice summer

Thomas, Coordinator of ERN-LUNG

New member of the NCT

We are happy to welcome Farjana Alam, our new NCT member as of June 2023 to our team. Farjana will be in charge of the ERN-LUNG patient registry project.

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If you are interested in a mixture of ERN-LUNG news on ongoing and future activities, rare disease news relating to ERN-LUNG´s expertise areas, EC news, webinars, events, links to surveys, please follow us here on LinkedIn. 

News & webinars
Events
The Impact of Rare Diseases on Mental Wellbeing Webinar (13 July)
People affected by a rare and undiagnosed…
Register now!
6th World Bronchiectasis Conference 2023 (18-20 July)
Join us in New York City on July 18-20, 2023 for…
Register now!
ERS webinar: Panel discussion: Improving outcomes for patients with severe asthma (18 July)
Chairs: Prof. Christopher E. Brightling…
Register now!
AfPH webinar on “Patient reported Outcome Measures in Pulmonary Hypertension Research and Care” (27 July)
The AfPH is delighted to announce its second…
Register now!
Panel discussion on challenges and solutions for the transition of cystic fibrosis patients to adult clinics (17 August)
European Respiratory Society (ERS) and Turkish…
Register now!
European Society of Cardiology (ESC) Annual Congress 2023 ( 25-28 August)
The 2023 edition of the European Society of…
Register now!
BEAT-PCD / ERN-LUNG Meeting (8 September)
BEAT-PCD BEAT-PCD Meeting & Training school…
Register now!
Academy of adult respiratory medicine (part 1, 9 September)
Part 1: 27–29 June, 2023 | Online Part 2…
Register now!
WHAT WE NEED FROM YOU

Let us know if you are participating in any conference where you will be presenting ERN activities and results

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