“European Reference Networks: A success story for patients living with a rare disease”, new booklet just issued by the EU Commission
The European Commission has published a booklet celebrating the European Reference Networks, which since 2017 have connected rare disease experts across Europe so that no patient is left behind, wherever they live. Through real-life stories, it shows how the 24 networks have changed patients’ lives: from long-awaited diagnoses to pioneering…
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What’s new on the Pulmonary Hypertension Knowledge Platform – September 2026
September was a busy month in the pulmonary hypertension world, with the European Society of Cardiology (ESC) and European Respiratory Society Congresses (ERS) bringing a wave of new research. The most important news is the update of the ERS Clinical Practice Guidelines for the treatment of pulmonary arterial hypertension (PAH),…
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Reporting from the European Society of Cardiology (ESC) and European Respiratory Society (ERS) Annual Congresses 2026, Louise Bouman, Vice President of the Alliance for Pulmonary Hypertension
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…
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Announcing five new “PEP Talks, part of our ongoing “Patient Empowering Patients” educational video series, September 28, 2026
We are thrilled to release five brand-new “Patients Empowering Patients” talks — five women, three countries (Italy, Turkey, the US), and five very different stories, all united by the same resilience and positive outlook that defines this community. From Aygün Mengelli Tomur’s lung transplant journey “From Waiting to Breathing: A…
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Patients and Advocates Call on US Congress to Pass Life-Changing Oxygen Reform Before End of Year
Patients, caregivers and advocates across the US are calling for passage of the SOAR Act (Supplemental Oxygen Access Reform Act), a bipartisan bill aimed at improving access to supplemental oxygen for over 1.5 million Americans with serious lung and heart conditions — including portable, high-flow liquid oxygen, which is often unreliable, delayed,…
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US Food and Drug Administration (FDA) updates Winrevair (sotatercept) label based on new trial data supporting earlier use in pulmonary arterial hypertension
The US Food and Drug Administration (FDA) has approved an update to the US label for WINREVAIR (sotatercept-csrk), Merck’s activin signaling inhibitor for pulmonary arterial hypertension, to include efficacy and safety data from the Phase 3 HYPERION trial. The trial specifically evaluated adults newly diagnosed with pulmonary arterial hypertension —…
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Join our prestigious panel of speakers on September 28 at 6 pm CEST to gain expert insights on how the new advances in science and AI can improve pulmonary arterial hypertension care!
The Alliance for Pulmonary Hypertension (AfPH) is back with the third instalment of their 2026 webinar series exploring how new science and AI are transforming pulmonary arterial hypertension care. This session taking place on September 28 at 6 pm CEST brings together leading experts from the US, UK, and Netherlands…
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Factors influencing treatment decisions in patients with pulmonary arterial hypertension, Deutsche Medizinische Wochenschrift, September 9, 2026
An article recently published in the Deutsche Medizinische Wochenschrift reported on a multicentre, non-interventional study of 79 patients who started pulmonary arterial hypertension therapy ≤12 months prior to study inclusion. Data available per routine clinical practice were collected. Furthermore, physician’s rationale for treatment decision was assessed. Key findings: A patient’s…
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Randomised, controlled trial on fluid restriction in pulmonary arterial hypertension, Respiration, September 9, 2026
A prospective, randomised, controlled single-centre study looking at whether fluid restriction (FR) helps pulmonary arterial hypertension patients with right heart failure and signs of volume overload. 41 patients (average age 70, mostly World Health Organisation (WHO) Functional class III, were split between intensified fluid restriction counselling (around 1.5 litres per…
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The French Pulmonary Hypertension Associations celebrates its 30th anniversary at its 6th Patient Congress on 13-15 November 2026
The French Pulmonary Hypertension Association HTaPFrance is holding its 6th Patient Congress, 13–15 November 2026 at Centre Valpré in Écully, France — coinciding with the association’s 30th anniversary. The congress is open to pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH patients, those awaiting or having received a…
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Pulmovant announces positive topline results from its Phase 2 PHocus trial of mosliciguat in pulmonary hypertension associated with interstitial lung disease (PH-ILD)
The findings of the Pulmovant Phase 2 PHocus trial of mosliciguat in pulmonary hypertension associated with interstitial lung disease (PH-ILD, Group 3 of the World Health Organisation, WHO, pulmonary hypertension classification) were presented on September 8, 2026, at the European Respiratory Society (ERS) International Congress 2026 by Marc Humbert, MD,…
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Breaking news! The European Respiratory Society (ERS) Clinical Practice Guidelines update for Pulmonary Arterial Hypertension (PAH) presented today at the ERS Congress in Barcelona, September 7, 2026
The European Respiratory Society (ERS) Clinical Practice Guidelines update for Pulmonary Arterial Hypertension (PAH) were presented today at the ERS Congress! The Alliance for Pulmonary Hypertension Vice President Louise Bouman – van der Waal was at the congress and attended this important session. Here is the link to the article:…
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Pulnovo Medical Announces Results of the PADN-HF-PH Trial at ESC Congress 2026, Simultaneously Published in The New England Journal of Medicine (NEJM), September 3, 2026
Pulnovo Medical’s PADN-HF-PH trial results were presented at European Society of Cardiology (ESC) Congress 2026 in Munich, Germany, and published simultaneously in a New England Journal of Medicine article. The multicenter, randomized trial enrolled 264 patients with pulmonary hypertension associated with left heart disease (pulmonary hypertension associated with left heart…
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On 19th September, pulmonary hypertension nurses Iain Armstrong and Javier Jimenez are taking the plunge for patients for “Swim Serpentine”, covering 1,609 metres, in London’s Hyde Park
On 19th September, pulmonary hypertension nurses Iain Armstrong (Chairman of the UK pulmonary Hypertension association), and Javier Jimenez will spend one mile experiencing what their patients face every single day. They will swim in the open water of London’s Hyde Park for Swim Serpentine, covering 1,609 metres in the heart…
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A familiar drug in unfamiliar territory: Will we manage to repurpose SGLT2 inhibitors in pulmonary arterial hypertension?, Journal of Heart and Lung Transplant, September 3, 2026
The September issue of Journal of Heart and Lung Transplant presents new data pointing to sodium-glucose cotransporter 2 (SGLT2) inhibitors — drugs like dapagliflozin and empagliflozin, originally developed for diabetes — as a potential novel avenue for treating pulmonary arterial hypertension. Initially valued for their effect on kidney glucose reabsorption,…
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Reduced brain blood flow, heart strain, and cognitive symptoms in pulmonary arterial hypertension, Therapeutic Advances in Respiratory Diseases, Jan-Dec 2026
Some patients with pulmonary arterial hypertension experience difficulties with memory, thinking, or mood. A group of Chinese researchers have investigated whether reduced blood flow to the brain is connected to heart strain and disease severity. They compared brain scans from 30 people with pulmonary arterial hypertension and 51 healthy individuals…
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Pulmonary hypertension associated with interstitial lung disease: a state-of-the-art review, European Respiratory Journal, Vol 68 Issue 1
Following the 7th World Symposium on Pulmonary Hypertension, a review published in the European Respiratory Journal summarises the current understanding of Pulmonary hypertension associated with interstitial lung disease (PH-ILD). It covers the condition’s clinical features, underlying biology, diagnosis, prognosis and treatment, while flagging diagnostic challenges — from overlapping symptoms to…
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What’s new on the Pulmonary Hypertension Knowledge Sharing Platform – August 2026
This month’s news roundup brings together the latest in pulmonary hypertension research and care. On the clinical front, several new studies stand out — from encouraging long-term rehabilitation data in the FONCE-HTAP trial, to new insights into pulmonary artery stiffness, BMPR2 signalling, and exercise safety after pulmonary endarterectomy. On the…
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The Pulmonary Vascular Research Institute (PVRI) publishes a 13-part series to help people living with pulmonary hypertension (PH), their families, and carers understand clinical trials,
This series was created by the IDDI Patient Engagement and Empowerment Workstream, of the Pulmonary Vascular Research Institute (PVRI), whose members are Hall Skaara, Louise Bouman, Jamie Myrah, Colleen Brunetti, Luke Howard, Gil Golden, Vera Toth-Fejel, Wendy Gin-Sing. The series explains what clinical trials are, how they work, and what it…
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Long-term efficacy and safety of rehabilitation in patients with pulmonary arterial hypertension: the FONCE-HTAP randomized controlled trial, Annals of the American Thoracic Society, July 20, 2026
The findings of a multi-center randomized controlled trial investigating the long-term efficiency of rehabilitation in patients with pulmonary arterial hypertension was published in the Annals of the American Thoracic Society on July 20, 2026. The study followed 47 patients with stable pulmonary arterial hypertension across 9 French centers, looking at…
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