Our annual Patient Organisation Networking Day will take place on Saturday 5 September. Join us as we discuss important topics on lung health with the ELF Patient Organisation Network and invited speakers.
Content Table
The ELF Patient Organisation Networking Day is an opportunity for members of the ELF Patient Organisation Network to connect, share knowledge and explore current challenges in respiratory health.
The 2026 event will take place on Saturday 5 September, aligned with the overall Congress theme “United for better breathing: partnership between patients, clinicians and researchers”.
This event will bring together patient organisations and healthcare professionals to connect, share experiences and learn from one another. Through panel discussions, patient perspectives and opportunities to exchange best practices, we will explore how to reduce barriers and strengthen collaborative working.
Together, we will consider what it means for patients to be equal partners in decision-making, addressing unmet needs and respiratory research. By encouraging open and constructive discussion, the event aims to support a shift towards more meaningful partnership between patients and professionals.
The day will conclude with shared commitments that support more effective, inclusive and impactful collaboration across the respiratory health community.
Each year, we invite patient representatives from organisations in the ELF network to contribute to the programme. This helps us learn from each other and be inspired by the experiences of peers from across Europe. We are keen to hear from patient organisations about their experiences collaborating with healthcare professionals and strengthening these partnerships.
This year there are three ways that patient organisations can formally share their experiences at the ERS Congress 2026:
If you would like to contribute, please follow the instructions on the form to express your interest.
Attendance is free, but registration is required to join online or in Barcelona, Spain. Registration is now open for in-person and online attendance.
Last year we explored topics relating to the theme: “Improving respiratory health – thinking globally, acting locally“. This event offered a space to reflect on global challenges and to learn from organisations that are responding in innovative ways, including local initiatives, national campaigns and international efforts. Participants also had the chance to explore how organisations can support their patient communities and strengthen respiratory health in a fast-changing world.
You can read more about the event and report on the event page, or watch the recording below:
ELF events and materials are free, so that everyone can access them. If you are able, we welcome donations to help us continue this support. We are grateful to all who contribute, helping people with lung conditions understand their health better and make their voices heard.
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.
Dr Eleonora Volpato is a clinical psychologist and researcher. Her work explores how psychological factors—such as personality traits, expectations, learning, and social influences—interact with psychological processing in those with a chronic illness, such as asthma and chronic obstructive pulmonary disease (COPD). She also discusses the impact of pulmonary rehabilitation and the treatment of anxiety and depression within these contexts.
Dr Volpato completed her PhD in Clinical Psychology at Università Cattolica del Sacro Cuore and earned her doctoral degree in
Integrated Psychotherapy from the Institute for Study and Research on Mental Illness, also in Milan. She is currently working as an Associate Research Fellow at KU Leuven in Belgium. She is also a Research Fellow at Università Cattolica del Sacro Cuore in Milan and a Clinical Psychologist at the Heart-Respiratory Rehabilitation Unit of IRCCS Fondazione Don Carlo Gnocchi.
Carlos Pons is the Managing Director of the Respiralia Foundation, a non-profit organisation supporting children and families affected by cystic fibrosis in the Balearic Islands, Spain.
Hilary Pinnock is Professor of Primary Care Respiratory Medicine at the University of Edinburgh. She leads programmes of work in the Centre for Applied Respiratory Research, Innovation and Impact (CARRii), the RESPIRE Global Health Research Unit, and the European Respiratory Society Clinical Research Collaboration ‘CONNECT’.
Her research focusses on delivery of care, specifically implementation of supported asthma self-management in routine primary care, and digital health interventions for non-communicable diseases. With colleagues from Bangladesh, India and Malaysia, she is evaluating pulmonary rehabilitation tailored to low resource settings.
Hilary chairs the Education Council of the European Respiratory Society.
Eliza is the Chair for this event and will guide the discussion, introduce speakers and will represent people living with bronchiectasis throughout the session.
Eliza has been a dedicated member of the ELF Bronchiectasis Patient Advisory Group since 2021, actively contributing to its initiatives and representing the group in a variety of projects and working groups. She holds a PhD in Criminal Law and works as a barrister in Greece.
James Chalmers is Asthma and Lung UK Professor of Respiratory Research and Honorary Consultant Physician.
As Professor of Respiratory Research and group leader at the Bronchiectasis Research Centre at the University of Dundee. Chair of EMBARC, The European Bronchiectasis network., James is chief investigator on a number of multi-centre bronchiectasis trials and runs a specialist clinic for bronchiectasis patients in the East of Scotland.
Jean-Michel is the chair of the ELF Mental health working group and president of the French Association for Pulmonary Fibrosis. He is also a member of the ELF Patient Advisory Committee (PAC) and has been a speaker at the ERS Congress.
Jean-Michel is keen to raise the profile of mental health in people living with lung disease.
Debra Montague has over 25 years of experience working in the pharmaceutical industry. She retired for health reasons when diagnosed with Stage 4 ALK-positive lung cancer nearly 8 years ago.
Her experience with lung cancer encouraged her to advocate for better screening and prevention policies to improve the outcomes for cancer patients. Debra founded the ALK Positive Lung Cancer (UK) charity in December 2018, where there are now 690 members. She divides her time between running the charity, supporting patients and advocating throughout the UK and Europe.
Debra works in partnership on joint projects with other UK charities, including EGFR Positive UK and the Ruth Strauss Foundation. She is also the Vice-President of Lung Cancer Europe and a Board member of ALK Positive Europe. She has addressed aspects of living with lung cancer at various conferences and advises pharmaceutical companies on the patient experience of living with the condition. Debra is also keen to raise awareness of lung cancer in people who have never smoked.
Oksana Kulish Skåra is a mother and patient advocate for people living with pulmonary hypertension (PH).
Oksana is the head of the "Sister Delila" Foundation and the Pulmonary Hypertension Association of Ukraine (PHURDA). She is also a co-organiser of the Ukrainian Respiratory Coalition (URC) and actively supports people living with rare lung diseases by organising social care programmes. Oksana works alongside medical specialists to improve the quality of patients' lives and implement modern treatment methods.
Oksana is also a member of the PH working group at the Ministry of Health of Ukraine, where she develops policies to improve treatment conditions. As an ambassador of the European Patient Ambassador Program (EPAP), she raises awareness among patients and medical professionals in Ukraine and beyond and helps develop educational resources. Oksana has shared her experiences and those of other Ukrainian patients at international conferences, such as PHA, PHA Europe and the ERS Congress.
Marion Wilkens, born in 1969, worked as a chemical engineer for many years before she was diagnosed with alpha-1-antitrypsin deficiency. Her two children are carriers of the disease. Looking for information about the disease, she and her husband came across the patient organisation Alpha1 Deutschland, which took away their fears by providing information. Being a member of the Board since 2013 she became president of Alpha1 Deutschland e.V. in 2015.
With now more than 1,000 members Alpha1 Deutschland e.V., established in 2001, is the largest alpha-1 patient organisation in Europe. The organisation stands for the old and proven as well as for innovation and new directions. It is a member of ACHSE (Alliance for Chronic Rare Diseases), the DLS (German Lung Foundation), the KNW (Children's Network) and the DGP (German Society for Pneumology and Sleep Medicine) and collaborates closely with many other organisations both in Germany and internationally.
Phil has lived with asthma for over 60 years. He has experience in public health research with the National Institute for Health Research as an Assistant Director and has volunteered as a patient representative for Asthma UK.
Phil has worked alongside the British Thoracic Society, National Institute for Health and Care Excellence and the Scottish Intercollegiate Guidelines Network to produce UK guidelines on diagnosing, monitoring and managing asthma.
