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ERN-LUNG Academy

The ERN-LUNG Academy is a curriculum for medical staff at any stage of their career, who wishes to get a proof of knowledge on rare respiratory diseases. It consists of Webinars and eCases, but also includes on-site training in ERN-LUNG Centers. We call for applications from participants of EU-member States from September to November each year. Classes start in January. If you wish to apply for next yearโ€™s class, please send a letter of motivation to info@ern-lung.eu

ERN-LUNG Online advance system

The EXpert Advisory BOard (EXABO) is a pan-European internet platform, which has been developed in the context of ERN-LUNG in liaison with the Medical Informatics Group of University Hospital Frankfurt, to answer questions on all aspects of rare respiratory diseases. The platform is primarily aimed at patients and care team members but is openly accessible by anyone who wants to ask a related question.

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Advancing CTEPH care: Exploring the Multimodal Management Strategy in the New ESC/ERS Guidelines

DATE:ย  12 Dec 2023
TIME: 18:30 – 20:30

This webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension. One particularly notable advancement is the inclusion of a new section focusing onย โ€˜Patient Associations and Patient Empowerment.โ€˜ Additionally, the guidelines now recommend that pulmonary hypertension centers establish collaborative partnerships with patient associations.ย The program for this series was established in close collaboration with Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and a global authority in the field.

Link to join:ย https://us06web.zoom.us/j/84739436854?pwd=qy7f0E2iDCyQVVSobI4XQPHshdEJTN.1

Meeting IDย 847 3943 6854

Passcodeย 842936

Speakersย (alphabetical order)

  • Pisana Ferrari โ€“ Secretary General, Alliance for Pulmonary Hypertension and President of AIPI, Italian Pulmonary Hypertension Association
  • Mรฉlanie Gallant Dewavrin, Director of HTaPFrance, French pulmonary hypertension association
  • Matt Granato โ€“ President and CEO of the PHA, Pulmonary Hypertension Association
  • Dieter Kulla โ€“ President of ph e.v., German pulmonary hypertension patient association
  • Gergely Meszaros, Project Manager at ERN-LUNG

 

Learning objectives

This webinar aims to provide a historical overview of the pulmonary hypertension association โ€˜movementโ€™ and its evolution over the past three decades. We will explore its journey and highlight its current pivotal role in pulmonary hypertension care. Understanding this evolution is key to recognizing the substantial impact patient associations have had on shaping todayโ€™s PH care landscape.

Agenda of webinar

  • Introduction โ€“ Pisana Ferrari
  • The โ€œPioneersโ€: the first world pulmonary hypertension associations
    • The PHA โ€“ย Matt Granato
    • HTaPFrance โ€“ย Mรฉlanie Gallant-Dewavrin
    • pulmonale hypertonie e.v. โ€“ย Hans-Dieter Kulla
  • The Current Landscape: A 30-Year Overview of World PH Associations and Umbrella Organizations โ€“ Pisana Ferrari
  • Evolution of the Role of Patient Associations and challenges for their future โ€“ Gergely Meszaros
  • Q&A Session