Self-management in pulmonary arterial hypertension: insights from patient interviews, Patient Preference and Adherence Journal, January 17, 2026

Twelve pulmonary arterial hypertension patients followed at the Fuwai Central China Cardiovascular Hospital in Zhengzhou City in the Henan Province, China, were interviewed to understand their self-management challenges. The findings were published in the Patient Preference and Adherence Journal on January 17, 2026, and reveal significant barriers to effective disease self-management across two main categories. […]

Self-management in pulmonary arterial hypertension: insights from patient interviews, Patient Preference and Adherence Journal, January 17, 2026 Read Post »

Exploring the relationship between adherence and outcomes in pulmonary arterial hypertension: A retrospective cohort study in the United States, Respiratory Medicine, January 12, 2026

Research published in Respiratory Medicine on January 12, 2026, explored adherence to pulmonary arterial hypertension-specific therapies across different therapeutic classes, identified factors associated with non-adherence and evaluated its impact on clinical outcomes. Adherence was measured by proportion of days covered (PDC) during the treatment period, defined as 60 days after first therapy until treatment discontinuation/censor.

Exploring the relationship between adherence and outcomes in pulmonary arterial hypertension: A retrospective cohort study in the United States, Respiratory Medicine, January 12, 2026 Read Post »

What life is like now: 20+ years post lung transplant, a live webinar organised by the Lung Transplant Foundation, January 16, 2026

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

What life is like now: 20+ years post lung transplant, a live webinar organised by the Lung Transplant Foundation, January 16, 2026 Read Post »

Pulmonary arterial hypertension associated with exposure to toxic rapeseed oil, European Respiratory Journal Open Research, December 19, 2025

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

Pulmonary arterial hypertension associated with exposure to toxic rapeseed oil, European Respiratory Journal Open Research, December 19, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey:understanding the experiences and perspectives of patients, European Respiratory Journal (ERJ) Open Research, November 2025

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 Global Patient Survey:understanding the experiences and perspectives of patients, European Respiratory Journal (ERJ) Open Research, November 2025 Read Post »

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025

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

The Pulmonary Hypertension Association of Canada: Patient Voices From Bench to Bedside and Beyond, Journal of Cardiac Failure, November 2025 Read Post »

The acute pulmonary vasoreactivity in pulmonary arterial hypertension revisited in the contemporary era, International Journal of Cardiology Heart and Vasculature, February 2026

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

The acute pulmonary vasoreactivity in pulmonary arterial hypertension revisited in the contemporary era, International Journal of Cardiology Heart and Vasculature, February 2026 Read Post »

Understanding the Connection Between Pulmonary Hypertension & Scleroderma, live webinar by the Canadian Pulmonary Hypertension Association PHA Canada, January 13, 2025

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

Understanding the Connection Between Pulmonary Hypertension & Scleroderma, live webinar by the Canadian Pulmonary Hypertension Association PHA Canada, January 13, 2025 Read Post »

Durability of sotatercept response in pulmonary arterial hypertension: Insights from extended real-world follow-up, International Journal of Cardiology, January 2, 2026

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

Durability of sotatercept response in pulmonary arterial hypertension: Insights from extended real-world follow-up, International Journal of Cardiology, January 2, 2026 Read Post »

Tania Cicognini pep talk on how to cut the clutter and cultivate what really matters full transcript

Hello everyone, I’m Tania Cicognini, I’m 34 years old and I’m a pulmonary hypertension patient. Today for the PEP Talk I wanted to talk about how to cut away the superfluous and cultivate what’s essential. Before the illness it was difficult for me to stop, so I ran without pause, I worked incredible shifts and

Tania Cicognini pep talk on how to cut the clutter and cultivate what really matters full transcript Read Post »

Deger Kesimoglu pep talk on how to tackle side effects of pulmonary arterial hypertension medications full transcript

Hello everyone. Welcome to another session of Patients Empowering Patients PEP Talks Program. My name is Değer Kesimoğlu and I’m 71 years old. I’m a member of the Pulmonary Hypertension and Scleroderma Patients Association in Turkey. And we are proud to be a member of the Alliance for Pulmonary Hypotension. And I am a volunteer

Deger Kesimoglu pep talk on how to tackle side effects of pulmonary arterial hypertension medications full transcript Read Post »

Wendy Vansteenkiste pep talk on how to create and engaging newsletter full transcript

Hello, everyone. My name is Wendy and I’m the President of the Belgium Pulmonary Hypertension Patient Organization. I’m 45 years old and a patient myself, diagnosed back in 2009. Today, I’d like to share with you something that has become an essential tool for us in connecting with the members of our patient organization. And

Wendy Vansteenkiste pep talk on how to create and engaging newsletter full transcript Read Post »

Reflecting on 2025: Our Year in Review. Thank you for standing with us, we look forward to continuing our vital mission together in 2026.

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

Reflecting on 2025: Our Year in Review. Thank you for standing with us, we look forward to continuing our vital mission together in 2026. Read Post »

“Wheels of Hope” – Raising Awareness for Organ Donation – end-of-year campaign recap, December 31, 2025

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

“Wheels of Hope” – Raising Awareness for Organ Donation – end-of-year campaign recap, December 31, 2025 Read Post »

Flolan, the first drug to be approved for the treatment of pulmonary arterial hypertension, has been discontinued after 30 years on the market

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

Flolan, the first drug to be approved for the treatment of pulmonary arterial hypertension, has been discontinued after 30 years on the market Read Post »

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