This event has ended. Recordings of the event are available to watch below.
ELF Patient organisation networking day is an annual event during the European Respiratory Society Congress that brings together organisations in the ELF Patient organisation network to learn about and discuss important topics in respiratory health.
The 2023 event took place on Saturday 9 September, 10:45 – 16:30 CEST. It focussed on the two topics of Patient and public involvement in research and Mental health, and included opportunities to hear from experts in the field and learn from other patient organisations across Europe and beyond. Read more about the programme and contributors below.
We offered a hybrid event for 2023, with the chance to attend in person in Milan, Italy or join online. The event was held in English.
You can also view the range of posters and resources submitted by organisations attending the ELF Patient Organisation Networking Day 2023. The posters have been produced to showcase important projects taking place across Europe in various disease areas, all linked to this year’s themes of Patient and public involvement in research and Mental health.
Kjeld Hansen was the Chair of the European Lung Foundation 2020-23. He is an experienced patient advocate and has been involved in a wide range of research and advocacy activities to improve care for respiratory patients. Kjeld has moderate to severe asthma. In his professional life, he works at Kristiania University College Oslo, Norway and is also associated with Copenhagen Business School in Fredericksburg, Denmark.
Mikaela Odemyr is the Chair of the European Lung Foundation's Patient Advisory Committee and President of the Swedish Asthma and Allergy Association. Mikaela has been involved in patient advocacy for over 15 years, with a special focus on raising awareness of severe asthma and allergies. She draws on her experiences as a patient and parent, as well as her interactions with lung patients across Europe. Mikaela has held senior roles with national and European patient organisations and has worked with politicians, health professionals and policy-makers at all levels to improve treatment and care.
Hilde de Keyser is CEO of Cystic Fibrosis Europe and has worked on a wide range of advocacy, research and patient involvement activities within Europe and internationally.
Liam Galvin has been involved with patient advocacy since 2009 when his family was impacted by Pulmonary Fibrosis. He is a volunteer director of the Irish Lung Fibrosis Association and co-founder and CEO of the European Pulmonary Fibrosis Federation.
Michal Shteinberg received her MD and a PhD in biochemistry from the Technion-Israel institute of technology. She trained in internal medicine and pulmonology, with a Fellowship in bronchiectasis and adult CF.
Dr. Shteinberg is heading the bronchiectasis and adult CF service in the Pulmonology institute and CF center, Carmel medical center, Haifa, Israel.
She is a Clinical Associate Professor in the Faculty of medicine at the Technion, Israel Institute of Technology, and a member of the executive committee of the Israeli Pulmonology Society.
Her main research interests are bronchiectasis and its overlap with other airway diseases, mainly rhinosinusitis, and connective tissue diseases, as well as adult CF.
Dr. Shteinberg is a member of EMBARC management and heading Patient Activities Work package.
Prof Andreas von Leupoldt is a Research Professor of Health Psychology at the University of Leuven, Belgium. The focus of his research is on the interactions between psychology and the respiratory system in healthy individuals and in people with respiratory disease (COPD, asthma) with a specific focus on biopsychosocial aspects of dyspnea (breathlessness), partly in relation to the experience of pain.
Professor Carlos Robalo Cordeiro is President of the European Respiratory Society. Prof Robalo Cordeiro is a pulmonologist and specialist in interstitial lung diseases. In Portugal, he runs the department of pulmonology in Coimbra University Hospital and is the Dean of Coimbra Medical School.
Professor Monika Gappa is President-Elect of the European Respiratory Society, starting her one-year term in September 2023. Prof Gappa is a respiratory paediatrician and Director of the Children’s Hospital, Evangelisches Krankenhaus Düsseldorf, Germany. Her main areas of interest are paediatric respiratory physiology, early origins of lung disease, severe asthma and allergy.
Francesco Pagnini, Psy.D., Ph.D., is a Professor of Clinical Psychology at Università Cattolica del Sacro Cuore in Milan, Italy. Francesco conducts research on the connection between the mind and body, exploring how psychological interventions can alter the trajectory of physical illnesses, including respiratory diseases. In addition to his clinical work, he serves as a consultant for the European Space Agency and NASA, advising on the implementation of psychological interventions for astronauts in deep space missions. Francesco is also an author of over 150 articles published in peer-reviewed journals
Luca is a patient with Sleep Apnoea who founded the patient association Apnoici Italiani in Italy in 2016. As an association Apnoici Italiani is focused on advocacy for recognition of the pathology, support for patients and caregivers, and they work for the creation and strengthening of diagnostic and therapeutic pathways on the territory. Find out more on their website: www.apneedelsonno.it
Anke Widenmann is President of EAT Esophageal Atresia Global Support Groups and a patient representative in the ePAG of European Reference Network for rare lung diseases (ERN Lung)
Natalia Maeva is founding member and current President of the Bulgarian Society of Patients with Pulmonary Hypertension. Since January 2022 Natalia was re-elected for a second term as Board member in Pulmonary Hypertension Association (PHA) Europe. She has been fighting pulmonary hypertension (PH) for more than 14 years. In addition she received a double lung transplant in 2016 and is blessed to live a normal active life for the last seven years. Natalia is a member of ELF's COVID-19 patient advisory group and is involved as a patient representative with the European Reference Network for rare lung diseases (ERN Lung).
Natalia holds a master’s degree in Journalism and Mass Communication, as well as a Ph.D. in Political Science from Sofia University “St. Kliment Ohridski”. Currently she works as editor in Digital Programs Directorate in Bulgarian National Radio.
Dimitris Kontopidis is Chair of the European Lung Foundation. Dimitris is a cystic fibrosis patient and advocate and has been deeply involved in developing healthcare policy for chronic diseases. Dimitris chose not to have a lung transplant and by doing so brought ‘medicine for all’ to the forefront of Greek politics, helping to save the lives of many people with cystic fibrosis.
Dimitris has held a number of leadership roles within national and European patient organisations, including Cystic Fibrosis Europe, the Greek Patient Association and now ELF. His contributions to patient rights advocacy and improving healthcare services have been recognised through a wide range of awards. In addition to his advocacy activities, Dimitris is an architect and founded the HUMANE Network, a social enterprise that combines design with care, health, and innovation, and a non-profit NGO that focuses on empowering and advocating for people with disabilities.
We want to say a special thanks to the following members of the working group who helped to organise this event!
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We are grateful to everyone who supports us in this way and helps lung health patients to understand more about their condition and have their voices heard.
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