The Lung Transplant Foundation has assembled a panel of long-term lung transplant survivors (20+ years) who share what life has been like in the decades following their successful lung transplant. This panel is a celebration of all that is possible when we say “yes” to lung transplant. 🗓️ Mark the date: January 16, 2026🕰️ 7 […]
A prospective analysis from the Spanish Registry of pulmonary arterial hypertension (REHAP) examined 59 patients diagnosed with toxic oil syndrome-associated pulmonary arterial hypertension (TOS-PAH) between 1997 and 2025, providing new clinical, pathological and genetic insights into this historically significant form of drug-induced pulmonary arterial hypertension. Key findings: The patient cohort was 63% female with a
The Pulmonary Hypertension Global Patient Survey (PH GPS), the largest survey of its kind in the pulmonary hypertension field, was collaboratively designed through a multidisciplinary consensus process and disseminated by pulmonary hypertension organizations globally. The survey analyzed data from 3,329 adult patients (mean age 52.2 years, 81.7% female) and 135 paediatric patients, examining healthcare provision,
The Pulmonary Hypertension Association of Canada, PHA Canada, has published an article reporting on the findings of a survey where they asked a small group of patients what they valued about having a right heart catheterization (RHC), and how they would like their care providers to share the information. The article is not open access
During right heart catheterization (RHC), the “acute vasodilator test” offers valuable insights into pulmonary circulation by evaluating vasoreactivity. A positive result identifies a rare pulmonary arterial subtype that may benefit from long-term calcium-channel blocker therapy (the so called “responders”). A recent study re-examines the applications, criteria, and objectives of acute vasodilator testing in pulmonary hypertension
Join Dr. Nathan Hambly, a respirologist at the Firestone Institute for Respiratory Health at St. Joseph’s Healthcare, Hamilton, Canada, as he explores why pulmonary arterial hypertension happens in scleroderma, how to spot the signs early, and what care options exist today. 🗓️ January 13 | 🕐 1:30 pm EST | 💻 Online🎙️ Hosted in partnership
A retrospective cohort study using data from 103 healthcare organizations compared 454 pulmonary arterial hypertension patients receiving sotatercept to 963.386 pulmonary arterial hypertension patients not receiving sotatercept. After propensity score matching to balance baseline characteristics, 346 patients per group were analyzed over an average follow-up of approximately 6-8 months. The sotatercept group demonstrated dramatically lower
As 2025 comes to a close, we reflect with gratitude on a year of remarkable growth and impact Our Pulmonary Hypertension Knowledge Sharing Platform, the digital hub hosting the Alliance for Pulmonary Hypertension’s activities, expanded significantly over the year, recording over 9.5k views from 4.5k visitors across 106 countries—representing significant growth compared to 2024. We
On October 11, 2025, the Alliance for Pulmonary Hypertension launched the inspiring “Wheels of Hope” campaign, following Czech cyclist and chef Lukáš Jakovec as he embarked on an extraordinary journey across Europe to raise awareness about organ donation and transplantation—all while cycling through some of Europe’s most challenging terrain. Key Numbers Route Highlights Starting from
After 30 years on the market, Flolan (epoprostenol) was discontinued in November 2025, marking the end of an era for pulmonary arterial hypertension treatment. Healthcare professionals worked throughout 2025 to transition patients to alternative therapies. Veletri, a room temperature-stable version of epoprostenol, remains available. A recent article in the News section of the US Pulmonary
Professor Marc Humbert, one of the world’s leading specialists in pulmonary arterial hypertension (PAH), has been awarded the prestigious Inserm Grand Prize in recognition of his extraordinary career dedicated to understanding and treating this life-threatening disease. Inserm is the French National Institute of Health and Medical Research. From Orphan Disease to Hope When Prof. Humbert
The Pulmonary Vascular Research Institute (PVRI) Congress 2026 will take place in the historic city of Dublin from 28 January – 1 February 2026. ➡️ Explore the full Congress programme at this link The first and last day (28 January and 1 February) will be satellite meetings with the main plenary sessions happening 29-31 January.
Patient-reported outcome measures (PROMs) capture patients’ own perspectives on their health and are crucial for improving care, yet they remain underused in clinical practice due to barriers like time constraints, language availability, and licensing costs. The European Reference Center for Rare Lung Diseases (ERN LUNG) is launching an ambitious initiative to implement a standardized PROM
The Pulmonary Vascular Research Institute (PVRI) GoDeep meta-registry integrates data from international pulmonary hypertension registries, from which 21,123 incident hemodynamically fully characterised patients were analysed to investigate the influence of sex on survival of patients. Findings revealed that male patients have significantly higher mortality rates than female patients across all types of pulmonary hypertension. This survival
The Alliance for Pulmonary Hypertension’s quarterly webinars aim to keep the community informed and connected by examining recent advancements, emerging research, and new initiatives in pulmonary hypertension. Through a blend of expert (scientific and patient) presentations and open dialogue, these sessions encourage active participation and create space for diverse perspectives from patients, caregivers, and healthcare
The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep
A very interesting article by Prof. Werner Seeger recounts the discovery and development of inhaled prostanoids for pulmonary hypertension at the Giessen Pulmonary Hypertension center (Germany) in the late 1980s-1990s (§). Initially researching acute lung injury/Acute Respiratory Distress Syndrome (ARDS), researchers at Giessen observed that while intravenous vasodilators worsened ventilation/perfusion mismatch, aerosolized prostacyclin (PGI2) reduced
Parenteral prostacyclin therapy remains the cornerstone for high-risk pulmonary arterial hypertension (PAH) patients but is limited by complications and reduced quality of life. A case series of eight high-risk patients demonstrated that adding sotatercept successfully enabled transition from intravenous to oral prostacyclin therapy. All patients received background dual therapy with endothelin receptor antagonists and phosphodiesterase-5
The European Medicines Agency’s Committee for Human Medicinal Products (CHMP) has recommended expanding WINREVAIR™ (sotatercept) approval for pulmonary arterial hypertension (PAH) treatment to include World Health Organisation (WHO) Functional Class II, III, and IV patients (previously only II-III). The recommendation is based on the Phase 3 ZENITH trial, which showed a 76% reduction in risk
The Food and Drug Administration (FDA)’s recent clearance for a Cereno Scientific Phase IIb trial on CS1 builds on the favourable safety, tolerability and encouraging disease-modifying signals observed in the Phase IIa study. CS1, an HDACi that acts through epigenetic modulation, has also been granted Orphan Drug Designation and Fast Track designation in the US. The
