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Dear Friends and Colleagues,
Following the call for European Reference Networks (ERN) proposals in July 2016, the first ERNs were approved in December 2016 and launched in March 2017. I was delighted to be a member of the ERN-LUNG family from its birth in March 2017 when all partners attended the ERNs kick-off in the beautiful city of Vilnius, Lithuania. In 2024, I am very satisfied to witness the growth and the many achievements of the ERN-LUNG. I would like to take this opportunity to thank warmly all the members and partners of our community and make a few announcements before the summer break and the Olympic and Paralympic Games in my hometown.
The first news I wanted to share with you is that the ERN-LUNG is now multi-beneficiary. This means that the coordinator remains the Klinikum der Johann Wolfgang von Goethe Universität in Frankfurt, Germany, and that the Assistance Publique Hôpitaux de Paris (Bicêtre Hospital, University Paris-Saclay, France) is now officially recognized as an affiliated entity in the grant agreement. Therefore, some important tasks will be transferred to Paris next fall, including the implementation of the new version of the Clinical Patient Management System (CPMS 2.0) as well as a stronger involvement in the ERN-LUNG registries and a direct contribution to the Network Coordination Team led by Thomas O.F. Wagner.
We are also thrilled to inform the ERN-LUNG partners that we will host the 2025 Annual Board Meeting in the Paris-Saclay University Hospital campus in Le Kremlin-Bicêtre, France, on Monday 24th and Tuesday 25th of March 2025. More news will come later, but we are sure that we will have the opportunity to meet many of you in person and we look forward to a vibrant celebration.
Our partnership with the ERS is strong and developing. Among many initiatives, we are delighted to confirm that there will be an ERN-LUNG session in the morning of 11th September at the annual ERS Conference in Vienna, Austria. In this Wednesday special session, ERN-LUNG will present a selection of its numerous activities. This year, there will be a focus on its progress in terms of patient support, research networks and broader geographical coverage throughout Europe. We aim to engage participants in building the future of the network and to extend our connection with Eastern European countries. In addition, our successful ERS/ERN-LUNG Virtual school on rare lung diseases will take place early February 2025 with a very appealing program.
On a more personal note, the Pulmonary Hypertension Core Network has played a major role in the 7th World Symposium on Pulmonary Hypertension which was held in Barcelona, Spain, on June 29-July 1st 2024. This major event is now organized every 5 to 6 years. It was endorsed by the ERN-LUNG, together with the European Respiratory Society, the International Society for Heart and Lung Transplantation, the French Society of Respiratory Diseases, and several patients’ organizations including the Alliance for Pulmonary Hypertension and Pulmonary Hypertension Association Europe, UK, USA, Japan, Korea and Latin America. Symbolically, the 2024 Symposium started for the first time with the patients’ perspective, showing the respect and importance given to patients’ priorities. Altogether, 15 task forces presented outstanding developments of pulmonary vascular medicine. The proceedings of this Symposium will be available open access on the website of the European Respiratory Journal at the end of August. The growing interest in pulmonary hypertension is underscored by the presence of an increasing number of specialists at the most recent World Symposia. In 1960 and 1973, the initial WHO Committees were attended by 14 and 22 participants, respectively. These numbers rose steadily in the following years, culminating in Barcelona where 1,697 attendees contributed to the open program. Supporting education, research and care is a strength of the ERN-LUNG which was strongly represented, demonstrating the impact of our network of patients, carers, healthcare providers and researchers. Many other communities within the ERN-LUNG have made major contributions in recent years and we hope to benefit from a longstanding European support to rare respiratory diseases throughout the continent.
We wish you an enjoyable summer holiday.
Marc Humbert, MD, PhD
ERN-LUNG Vice-Coordinator
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