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Dear All,
When the question was raised whether I would be happy to write this newsletter memo I immediately said yes, however, at that point I was not aware that it will be so challenging due to the many activities ERN-Lung is involved in and embarking upon.
The Annual Board Meeting (Feb 19/20) is our most important yearly event where all the members, patient representatives and the network coordination team can meet, report on last year’s achievements, outline future plans and activities and exchange ideas. Despite the Lufthansa strike many attendees could make the in-person event in Frankfurt and we could hardly see as many interactions, questions and proposals as we had this time. It is a clear sign that ERN-Lung has become mature: the new funding period also brings new opportunities which attracts unparalleled interest from all the stakeholders.
Naturally, the detailed introduction of all the projects presented during the board meeting does not fit to the frame of this newsletter, but let me pick some of them.
The attendees were surprised with new and nicely-printed flyers on core networks’ basic information including minimal criteria on membership. It was good to see that these materials triggered immediate discussion on these requirements whether they are still valid or not – so one of the aims was achieved beside providing a raising awareness tool. The use of health-related quality of life questionnaires in clinical practice is always a hot topic: survey data ran amongst ERN-Lung members showed big differences. Many inquiries are usually raised about the members’ reporting obligation towards ERN-Lung and Clinical Patient Management System (CPMS) – we hope that our new tool, ERN-Lung MAP will make this exercise smoother and CPMS 2.0 will better serve the needs. The presentation on ERN-Lung registries, the possibilities ERN-Lung academy offers and the report on the undiagnosed patients working group generated great interest. The Go-East project, the endeavor of ERN-Lung to better integrate Eastern European countries to ensure the best possible care for patients living in these countries, remained one of the priorities as well as the transplantation working group which is still looking for candidates.
You might ask what is ahead of us in the coming months. Implementation, implementation, and proper implementation...
We are working hard to better position ERN-Lung: we will continue sending regular updates throughout our communication channels, you will also see new campaigns and content on our social media platforms, but it is also upon you to spread information about us, request ERN-Lung endorsements of your events and include acknowledgement or affiliation of ERN-Lung in scientific papers.
Let me close this memo with a big thank you to all our members and patient representatives for their outstanding dedication and last but not least to the European Commission, politicians, decision makers and other stakeholders who made ERNs possible and committed to the concept.
Gergely Meszaros
Project manager | ERN-Lung |
