Louise Bouman, Vice President of the Alliance for Pulmonary Hypertension and Chair of the Dutch pulmonary hypertension foundation, attended both the European Society of Cardiology and the European Respiratory Society (ERS) Annual Congresses 2026 taking place respectively in Munich, Germany (August 28-30), and Barcelona, Spain (September 5-9). Based on the sessions she followed, she has put together a patient-friendly overview of the key developments, emerging trends and discussions shaping pulmonary hypertension care and research. From new approaches to diagnosis and treatment to questions of access, patient involvement and the future of personalised care, the report brings together a wide range of perspectives from the two congresses.
Disclaimer: These summaries were prepared based on notes taken during the sessions and are intended to give a general, non-technical overview of the topics discussed for a patient and lay audience. They do not represent official transcripts, verbatim quotes, or formal positions of the named chairs, speakers, or their institutions. Any errors, omissions, or simplifications are the responsibility of the author of this summary, not of the presenters. For precise data, methodology, or official recommendations, please refer to the original presentations, published guidelines, or peer-reviewed literature.
EUROPEAN SOCIETY OF CARDIOLOGY
Several sessions at the European Society of Cardiology Congress focused on new developments in pulmonary hypertension (PH), including more personalised diagnosis, artificial intelligence, new treatments and the challenges of distinguishing different types of pulmonary hypertension.
Personalised diagnosis and treatment of pulmonary hypertension
Roberto Badagliacca MD PhD, from the Policlinico Umberto 1° in Rome, Italy, presented the role of haemodynamics and echocardiography in the diagnosis and assessment of pulmonary hypertension. Haemodynamics refers to measurements of how blood flows through the heart and blood vessels, usually obtained during a right-heart catheterisation. Echocardiography uses ultrasound to look at the heart. Both are already important for diagnosing pulmonary hypertension, but increasing evidence shows that they can also provide information about a person’s risk and help doctors decide which treatment goals are most appropriate.
Artificial intelligence in pulmonary hypertension
Prof. Irene M. Lang from the Medical University of Vienna discussed how artificial intelligence (AI) could become part of the pulmonary hypertension diagnostic pathway. AI can analyse information from routine tests such as electrocardiograms (ECG) and echocardiograms (ECHO), computerised tomography (CT), cardiac magnetic resonance imaging (MRI), blood tests and medical records. By combining these different sources, AI may be able to identify subtle patterns that are difficult to recognise otherwise.
One promising area is the use of AI to analyse electrocardiograms. In the future, AI could potentially help identify people who may have pulmonary hypertension earlier, before the disease is clearly recognised. However, an important message was that AI is not intended to replace pulmonary hypertension specialists. The major challenge now is to demonstrate that these AI tools work reliably in different patient populations and that using them actually improves patient care.
Grzegorz Kopeć, Head of the Department of Cardiac and Vascular Diseases with Pulmonary Circulation Centre, Institute of Cadiology, Jagiellonian University Medical College, Cracow, Poland also discussed the future role of AI in pulmonary hypertension. AI is developing from tools that estimate risk towards systems that could support doctors in everyday clinical decisions. Possible applications include earlier detection of disease, analysing scans and electrocardiograms, monitoring patients remotely and helping doctors combine information about a person’s medical history, genetics, lifestyle and treatment response. AI could also reduce administrative work and potentially improve access to healthcare through translation, remote screening and patient education. The key challenge remains clinical validation: showing in real-world, prospective studies that these tools are accurate and genuinely useful for patients.
Pulmonary hypertension associated with left heart disease
Stephan Rosenkranz, from the Heart Center at the University of Cologne, Germany, discussed pulmonary hypertension associated with left heart disease, also known as World Health Organisation (WHO) Group 2 pulmonary hypertension. This type of pulmonary hypertension is common in people with heart failure and certain valve diseases. The first priority is to treat the underlying heart condition. Depending on the specific problem, this can include medication, devices or procedures for heart valve disease. Several new approaches to treating the pulmonary blood vessels are being investigated, including newer medicines such as sotatercept, as well as interventional treatments. However, pulmonary vasodilator medicines are not generally recommended for PH caused by left heart disease based on current evidence. Correctly identifying the type of pulmonary hypertension is therefore very important before choosing treatment.
New treatment research: ralinepag
In a late-breaking clinical science session, George Giannakoulas, Professor in Cardiology at Aristotle University of Thessaloniki, Greece, presented results from the Phase 3 ADVANCE Outcomes study of ralinepag. Ralinepag is an oral medicine that targets the prostacyclin pathway, an important pathway involved in the regulation of the pulmonary blood vessels. The study looked at people with World Health Organisation (WHO) Group 1 pulmonary arterial hypertension who were already receiving standard pulmonary arterial hypertension treatment.
The study found that adding ralinepag delayed the time until the first clinical worsening event. The reported treatment effect was consistent across different patient groups, including people whose pulmonary arterial hypertension was associated with connective tissue disease. The study also showed improvements in measures such as 6-minute walking distance and NT-proBNP, a blood marker that can provide information about stress on the heart.
These results are important research findings, but further consideration is needed before any new treatment becomes part of routine care for patients.
Levosimendan for pulmonary hypertension associated with heart failure with preserved ejection fraction (HFpEF)
Professor Sanjiv Shah, from the Cardiology and Vascular Lab at Jersey City Medical Center, US, presented research into levosimendan for people with pulmonary hypertension associated with heart failure with preserved ejection fraction. Pulmonary hypertension is very common in this population. Previous research suggested that levosimendan may reduce pressure in the heart and improve exercise capacity. In the study presented, patients receiving levosimendan had a slightly greater improvement in 6-minute walking distance compared with placebo. N-terminal pro-B-type natriuretic peptide (NT-proBNP) levels were also reduced, and no severe adverse events or significant arrhythmias were reported in the presented results. A larger, ongoing Phase 3 study will provide more information, including with longer follow-up and more participants.
Respiratory infections and cardiovascular health
Prof. George Giannakoulas also presented information about the relationship between respiratory infections and cardiovascular disease. Respiratory infections such as influenza, Respiratory Syncytial Virus (RSV) and pneumonia can place significant stress on the cardiovascular system. People who already have cardiovascular disease may have a higher risk of severe complications from respiratory infections. The presentation highlighted the importance of vaccination as part of cardiovascular prevention, particularly for people who may already be at increased risk.
Chronic obstructive pulmonary disease (COPD), pulmonary hypertension (PH) and cardiovascular disease
Professor Claus F. Vogelmeier, from the University Clinic Marburg, Germany, discussed the close relationship between chronic obstructive pulmonary disease (COPD) and cardiovascular disease. Cardiovascular disease is very common in people with chronic obstructive pulmonary disease. This means that doctors need to consider both the lungs and the cardiovascular system when assessing a patient’s overall risk. Bronchodilator treatment for chronic obstructive pulmonary disease may also have effects on cardiac function, although the relationship between lung and heart health is complex.
When WHO Group 2 and Group 3 pulmonary hypertension overlap
Two presentations focused on an important challenge: sometimes it is difficult to determine whether pulmonary hypertension is mainly caused by heart disease (World Health Organisation Group 2), lung disease (World Health Organisation (WHO) Group 3), or a combination of both. Clara Hjalmarsson, cardiologist at Sahlgrenska University Hospital in Sweden, described how these conditions can overlap. Patients may have several contributing factors, such as obesity, atrial fibrillation, high blood pressure, coronary artery disease, chronic obstructive pulmonary disease or interstitial lung disease. Her message was that the real patient does not necessarily fit neatly into one pulmonary hypertension category. Doctors therefore need to look at the whole picture, including the heart, lungs and haemodynamics.
Dr Esther Nossent from Amsterdam UMC presented the pulmonologist’s perspective. She also emphasised that overlap between World Health Organisation Groups 2 and 3 pulmonary hypertension is common. Rather than immediately assigning a patient to a category, doctors should first ask: what is actually driving the disease in this individual?
This may require detailed testing, including right-heart catheterisation and sometimes exercise testing. Treatment should then focus on the underlying lung and/or heart disease and other contributing conditions.
What does this mean for patients?
A number of common themes came through these sessions:
- Pulmonary hypertension is complex, and patients do not always fit neatly into one category.
- Personalised diagnosis is becoming increasingly important. Doctors need to combine symptoms, imaging, haemodynamics, blood tests and other information.
- AI could help detect pulmonary hypertension earlier and support clinical decision-making, but it still needs to be properly validated before widespread use.
- New treatments are being investigated, including medicines targeting different pathways and new interventional approaches.
- For pulmonary hypertension associated with heart or lung disease, treating the underlying condition remains central to management.
- Research is increasingly looking beyond a single measurement and towards a more complete picture of each individual patient.
TAKE HOME MESSAGE: For patients, perhaps the most important message is that the future of pulmonary hypertension care is moving towards more personalised assessment and treatment. At the same time, new technologies and treatments need to demonstrate not only that they work in research studies, but that they improve outcomes that matter to patients in everyday life.
EUROPEAN RESPIRATORY SOCIETY
Pulmonary vascular diseases: what is changing?
Chairs: Joanna Pepke-Zaba, Erik Klok and Harm Jan Bogaard Speakers: Rozenn Quarck, David Jenkins, Irene Lang and Erik Klok
This session looked at new developments in pulmonary vascular diseases, with a strong focus on chronic thromboembolic pulmonary hypertension (CTEPH). Researchers are learning more about why blood clots in the lungs do not always disappear normally. New technologies, including genetic studies, analysis of proteins and single-cell analysis, are helping scientists understand how blood vessels and surrounding tissue change in chronic thromboembolic pulmonary hypertension. These discoveries may help identify new ways to diagnose and treat the disease in the future.
For people with chronic thromboembolic pulmonary hypertension, pulmonary endarterectomy (PEA) remains an important treatment. During this operation, surgeons remove the chronic material blocking the pulmonary arteries. For patients who can undergo surgery, pulmonary endarterectomy can improve blood flow through the lungs, reduce pressure in the pulmonary arteries and improve long-term outcomes.
For patients who cannot have surgery, or who have remaining blockages after surgery, balloon pulmonary angioplasty (BPA) is another important treatment option. In balloon pulmonary angioplasty, a small balloon is used to open narrowed areas of the pulmonary arteries. The technique continues to develop, allowing doctors to treat increasingly complex disease.
The session also discussed rehabilitation for people who continue to have symptoms after a pulmonary embolism. Supervised exercise may help improve exercise capacity and symptoms in selected patients.
Overall, the message was that treatment of chronic thromboembolic pulmonary hypertension is becoming increasingly personalised. Surgery, balloon procedures and medication each have a role, and decisions need to be made by multidisciplinary teams with expertise in pulmonary vascular disease. International registries and biobanks are also helping researchers understand which treatments work best for which patients.
New treatments for pulmonary arterial hypertension: from laboratory research to patients
Chairs: Grazyna Kwapiszewska-Marsh and Mona Lichtblau Speakers: Olivier Sitbon, Vallerie V. McLaughlin, Alex Rothman and Louise Bouman
This session explored how new discoveries about the biology of pulmonary arterial hypertension are being translated into new treatments. One of the major developments discussed was sotatercept, which works on a biological pathway involved in the abnormal growth and function of cells in the blood vessels of the lungs. Clinical trials have shown improvements in important measures such as walking distance, pulmonary vascular resistance and the time before clinical worsening.
Real-world research is also beginning to provide more information about how these changes may affect the body, including oxygen delivery, right-heart function and the ability of muscles to use oxygen. At the same time, doctors are learning more about possible side effects. These include increases in haemoglobin, bleeding and changes in small blood vessels. This means that regular monitoring remains important when using the treatment.
Other new approaches are also being studied. Tyrosine kinase inhibitors, including imatinib and seralutinib, target different biological pathways involved in abnormal changes in the pulmonary blood vessels. Clinical trials are helping researchers understand which patients might benefit most from these treatments.
Another area of development is remote monitoring. Devices that measure pressure in the pulmonary arteries could allow doctors to detect changes earlier and adjust treatment more precisely. This approach is also being explored in children.
The patient perspective was an important part of the session. New treatments should not only help people live longer, but should also make it possible to live better and more independently. The burden of treatment itself matters: how often treatment has to be given, how it affects daily life, and whether it allows people to travel, work, sleep and participate in normal activities.
The key message was therefore broader than simply developing new medicines: success in treatment of pulmonary arterial hypertension should include survival, quality of life, independence and what matters to the individual patient. Patient-reported outcomes and real-world evidence can help make these aspects part of treatment decisions.
Updated guidelines for the treatment of pulmonary arterial hypertension
Chairs: Marion Delcroix, Katarina Zeder and Gabor Kovacs Patient representative: Pisana Ferrari. Speaker(s) identified in the summary Gabor Kovacs and Katarina Zeder
This session presented the updated recommendations for treating pulmonary arterial hypertension, building on the 2022 European Society of Cardiology/European Respiratory Society guidelines.
One important development is the inclusion of activin-signalling inhibitors, including sotatercept, in the treatment strategy. Evidence from clinical trials has shown improvements in exercise capacity, N-terminal pro-B-type natriuretic peptide levels and the time before clinical worsening.
The updated recommendations support the use of this treatment in patients who remain at intermediate-low, intermediate-high or high risk despite treatment for pulmonary arterial hypertension. There is currently not enough evidence to make a recommendation for patients who are already at low risk.
The treatment approach continues to focus on assessing a patient’s risk and adjusting treatment when the desired level of disease control has not been achieved. The aim is not simply to treat a number on a test, but to reduce the patient’s risk of worsening disease and, where possible, move towards a state in which the disease is well controlled.
The session also discussed right heart catheterisation, an invasive test that directly measures pressures and blood flow in the heart and lungs. The updated approach emphasises using this test when the results are expected to influence treatment decisions or provide important information about prognosis.
Some important questions remain unanswered. More research is needed, particularly for people who are already at low risk, as well as to improve how doctors assess risk and decide when invasive testing is most useful.
For patients, the overall message is that treatment of pulmonary arterial hypertension is increasingly based on regular assessment and individualised treatment, rather than a one-size-fits-all approach.
Interstitial lung disease and pulmonary hypertension: understanding the connection
Speakers: Athina Trachalaki, Yochai Adir, Hans-Ulrich Kauczor, Marion Delcroix, Katerina Antoniou, Parth M. Rali and Gabor Kovacs
This session focused on the relationship between interstitial lung diseases and pulmonary hypertension.
Interstitial lung diseases include a number of lung diseases in which the lung tissue becomes damaged and, in some cases, scarred. Researchers are increasingly recognising that changes in the blood vessels of the lungs can occur early in this process.
Scientists are studying how damage to the cells lining the blood vessels, changes in the vessel walls and abnormal formation of new blood vessels may contribute to disease progression. Research at the level of individual cells is helping to reveal how immune cells and blood vessels interact during lung damage and fibrosis.
The session also highlighted the importance of precision medicine. People with interstitial lung disease do not all have exactly the same disease mechanisms or treatment needs. Identifying different disease characteristics may help doctors determine which patients are most likely to benefit from particular treatments.
One example discussed was combined pulmonary fibrosis and emphysema, a condition in which emphysema and pulmonary fibrosis occur together. This combination can be particularly difficult to manage and is associated with a poor prognosis.
Clinical research has also produced encouraging results. The INCREASE study showed that inhaled treprostinil can improve exercise capacity and quality of life in people with pulmonary hypertension associated with interstitial lung disease. The TETON trial is investigating its effect on the decline in lung function.
Advanced imaging, including quantitative computed tomography and newer computed tomography technologies, may also help doctors identify changes in the lung and pulmonary blood vessels in greater detail.
The field is moving towards combining better imaging, biological markers and more targeted treatments. The aim is to recognise disease earlier, understand why it progresses and ultimately provide treatment that is better matched to each individual patient.
Lung transplantation: patients and professionals discussing access to care
Organised by: European Lung Foundation (ELF). Co-chair: Dimitris Kontopidis Speakers/participants: Dimitris Kontopidis, Vicky Gerovasili, Natalia Maeva and Chantal (caregiver)
This session focused on an issue that can make a major difference to patients: access to lung transplantation.
Lung transplantation can significantly improve quality of life for people with severe lung disease. However, access to transplantation is not equal across Europe.
Patient experiences collected by the European Lung Foundation showed several barriers. These included long waiting times for donor organs, the financial and practical burden of travelling, and the need to receive treatment far from home. Some patients have to travel to another country because there is no lung transplant programme in their own country.
In the survey presented during the session, 163 people from 16 countries shared their experiences. Around 30% reported travelling for more than two hours or travelling abroad for their transplant. Despite these challenges, 91% reported an improvement in their quality of life after transplantation.
The session also highlighted that transplantation does not end the patient’s journey. Patients may need long-term follow-up, rehabilitation and support, sometimes in a different healthcare system from the one where they received their transplant.
Fourteen European countries currently do not have a lung transplant programme. Cross-border cooperation can therefore be essential for patients in these countries. New technologies, such as machine perfusion, may also help make more donor lungs suitable for transplantation.
Patients and caregivers described not only the medical challenges, but also the emotional impact of waiting for an organ and navigating complicated healthcare systems.
The overall message was that access to transplantation remains an important European health-equity issue, and that patient organisations can play an important role in documenting inequalities and advocating for better systems.
Chronic obstructive pulmonary disease, cardiovascular disease and pulmonary vascular disease
Chairs: Grazyna Kwapiszewska-Marsh and Mona Lichtblau Speakers: Daiana Stolz, Gabor Kovacs, Jurjan Aman and Chris P. Gale
This session explored the close relationship between chronic obstructive pulmonary disease (COPD), cardiovascular disease and pulmonary vascular disease.
Chronic obstructive pulmonary disease is often thought of mainly as a disease of the lungs. However, people with chronic obstructive pulmonary disease also have an increased risk of cardiovascular problems. Exacerbations of chronic obstructive pulmonary disease — periods when symptoms suddenly become worse — can further increase this risk for months afterwards. This means that treating chronic obstructive pulmonary disease should not only focus on breathing symptoms. Doctors also need to consider cardiovascular risk, including blood pressure and cholesterol, and use appropriate cardiovascular assessments when needed.
The session discussed the importance of recognising these risks early and providing appropriate treatment. It also introduced approaches for improving cardiovascular risk assessment in people with chronic obstructive pulmonary disease. Researchers are also investigating what happens inside the lungs at a much smaller level. Damage to the cells lining the tiny blood vessels in the lungs can interfere with the exchange of oxygen. Advanced molecular techniques are helping scientists understand how smoking and low oxygen levels can damage this vascular system.
Pulmonary vascular disease can also occur alongside chronic obstructive pulmonary disease, adding another layer of complexity. This reinforces the importance of looking at the patient as a whole rather than treating each condition separately.
The broader message was that respiratory and cardiovascular health are closely connected. Better care may come from bringing these different areas of medicine together rather than treating lung and heart disease as completely separate problems.
Empowering patients and healthcare professionals for better lung health
Chairs: Phil Taverner and Rachel Ong-Salvador Speakers: Liz Steed, José Miguel dos Santos Castro Padilha, David Drummond and Karin Wadell
This session focused on something that is increasingly important in healthcare: patients and healthcare professionals working together as partners.
One example looked at children with asthma. Traditional medical consultations can sometimes focus mainly on the adults in the room, even though the child is the person living with the disease. Digital tools, such as smart inhalers and remote monitoring, may help support children and families — but they need to be designed carefully.
More monitoring does not automatically mean better care. If patients are constantly monitored or receive too many alerts, technology can start to feel intrusive and may reduce rather than increase independence.
Another presentation showed how digital tools for people with chronic obstructive pulmonary disease can be developed together with patients, caregivers and healthcare professionals. Methods such as mapping a patient’s journey through healthcare and using interactive exercises can help developers understand what people actually need in daily life.
An important point was that self-management is more than giving patients information. People also need the confidence, skills, support and opportunity to use that knowledge in everyday life.
Healthcare systems themselves can sometimes make this difficult. Limited consultation time, professional hierarchies and fragmented care can all get in the way of genuine partnership.
Digital health can help extend support beyond the consultation, but it should not replace the human relationship between patients and healthcare professionals.
The session also addressed the well-being of healthcare professionals. Burnout and exhaustion can affect both professionals and patient safety. Peer support, mentoring and approaches such as Schwartz Rounds can help, but lasting improvement also requires changes at an organisational level.
The central message was that better healthcare requires both patients and healthcare professionals to be supported and involved as partners.
ERN-LUNG (European Reference Network for Rare Lung Diseases): building a patient-focused European network Speakers/participants named in the summary: Marc Humbert, Thomas Wagner, David Montani, Liam Galvin, Catherine McRae, Roma Armstrong, Hal Skaara, Olivier Sitbon, Steffi Varghese, Marion Delcroix and Gergely Meszaros
This session focused on ERN-LUNG, the European Reference Network for Rare Lung Diseases. The network brings to gether expertise from across Europe. Its underlying idea is simple: knowledge should travel across Europe, rather than patients always having to travel to find the right expertise. The session showed how European collaboration can support patients through shared expertise, education, research and clinical networks. Tools such as the ERN-LUNG Academy and the ERN-LUNG Clinical Patient Management System help healthcare professionals share knowledge and discuss complex cases across borders.
Genetics and genomics were also discussed. Better understanding of genetic factors can help doctors diagnose certain rare lung diseases, provide appropriate genetic counselling and, in some situations, identify people who may benefit from earlier monitoring.
Patient-reported information is another important part of this work. The EuroQol five-dimension questionnaire was discussed as a relatively simple tool that can be used across different diseases and countries to capture aspects of quality of life. Patient-driven registries can add real-world information about what happens to patients outside clinical trials.
A major challenge is that data are often collected differently in different countries and registries. Improving the ability to share and compare information could make European research more powerful.
Patient organisations also have an important role in clinical research. They can contribute to trial design, recruitment and advocacy, and help ensure that research addresses questions that matter to patients.
The session also highlighted an important difference across Europe: regulatory approval of a medicine does not necessarily mean that patients in every country can actually receive it. Differences in reimbursement and access remain a significant issue.
Finally, the value of plain-language summaries of medical guidelines was emphasised. When patients can understand the evidence and recommendations, they are better equipped to participate in conversations and shared decisions about their care.
ERN-LUNG is therefore not only about connecting specialists. It is also about building a European system in which patients, healthcare professionals and researchers work together to improve diagnosis, treatment, research and access to care.
