The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025

A study published in Pulmonary Circulation on June 17, 2025 has examined the relationships between fatigue, pain, anxiety, depression, and quality of life in 68 adults with pulmonary hypertension, recruited from global pulmonary hypertensions associations, who completed a series of self-report measures. The researchers found alarmingly high rates of these symptoms: 86.8% experienced clinical levels […]

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025 Read Post »

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available

On 15 May 2025, the European Patient Forum (EPF) hosted a webinar to inform patients, health professionals, researchers, and other stakeholders about the key aspects of the European Health Data Space (EHDS). The webinar focused on patients’ rights and the practical changes the regulation introduces. The recording is now available at this link Photo credit:

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available Read Post »

Survey uncovers significant emotional and social impacts beyond traditional medical outcomes for women with pulmonary arterial hypertension, Healio, May 19, 2025

Isabella Hornick’s article, “ Women with Pulmonary Arterial Hypertension Report Struggles with Family Planning and Caregiver Needs”, published by Healio on May 19, 2205, reports on comprehensive survey conducted on 275 women with pulmonary arterial hypertension aged 21-50 from the U.S., U.K., Canada, and Germany. The average age of the included women differed at PAH

Survey uncovers significant emotional and social impacts beyond traditional medical outcomes for women with pulmonary arterial hypertension, Healio, May 19, 2025 Read Post »

Exploring the relationship between sleep difficulties, worry, mood and health-related quality of life in adults living with pulmonary hypertension, a study by researchers at the University of Sheffield, UK

Sleep difficulties are commonly reported by individuals living with pulmonary hypertension (PH); however, there is limited research examining their impact. In other chronic health conditions, sleep problems can affect health-related quality of life and mental wellbeing, potentially increasing the likelihood of experiencing anxiety and low mood. Establishing this relationship in adults with pulmonary hypertension could

Exploring the relationship between sleep difficulties, worry, mood and health-related quality of life in adults living with pulmonary hypertension, a study by researchers at the University of Sheffield, UK Read Post »

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5

Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5 Read Post »

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025

A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the

Diagnostic Delays and Quality of Life in Japanese Patients with Pulmonary Hypertension: A Nationwide Survey, Pulmonary Therapy, March 18, 2025 Read Post »

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open!

In 2023-24, the Alliance for Pulmonary Hypertension organized 14 successful live webinars that brought together leading experts to discuss key topics in pulmonary hypertension management, research, and patient support. The series featured speakers from 20 countries across five continents, including 24 scientific experts, 13 patients and patient advocates, and two patient engagement specialists who moderated

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open! Read Post »

Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America, British Medical Journal, December 31, 2024

An article published on the British Medical Journal Open on December 31, 2024, titled “Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America”, reports on the findings of a cross-sectional survey with retrospective data collection. A total of 246 physicians, from University/teaching hospitals,

Pathway to care, treatment and disease burden of pulmonary arterial hypertension: a real-world survey of physicians and patients in Latin America, British Medical Journal, December 31, 2024 Read Post »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants!

The Alliance for Pulmonary Hypertension (AfPH) recently concluded its 14th webinar, marking the culmination of an educational initiative that began in June 2023. These virtual gatherings brought together internationally renowned experts in pulmonary hypertension, who shared their expertise on a comprehensive range of topics crucial to advancing patient care and quality of life. The diverse

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants! Read Post »

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS)

Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,

Update on the Pulmonary Vascular Research Institute (PVRI)’s Pulmonary Hypertension Global Survey (PH GPS) Read Post »

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation Read Post »

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published

The EU Medical Device Regulation (MDR) and In Vitro Diagnostic Regulation (IVDR), introduced in 2017, aims to enhance patient safety, transparency, and information through stricter quality standards, performance evaluations, and oversight across the device lifecycle. But not all changes have been fully put into action, and many patients are still waiting to see benefits. To

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Read Post »

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages!

The Pulmonary Vascular Research Institute (PVRI) organised a patient-directed webinar on “Debunking Myths of Lung Transplantation” on September 25, 2024. This was an outstanding webinar: the explanations were exceptionally clear and delivered in easy-to-understand language, covering every step of the transplant journey—from getting listed and preparing for surgery, through the operation and immediate post-op, to

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages! Read Post »

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available

The video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on Pulmonary Hypertension”, which took place on 2 September, 2024, in now available online on the ERS Respiratory Channel at this link Expert panellists Marc Humbert, Anton Vonk Noordegraaf, Ulrich Silvia, Isabel BLANCO VICH and Louise Bouman

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available Read Post »

Join the US Pulmonary Hypertension Association and US National Scleroderma Foundation for the “Managing Scleroderma and Pulmonary Arterial Hypertension” live webinar Friday, Sept. 20, 2024

The Pulmonary Hypertension Association in the US in collaboration with the National Scleroderma Foundation is organising a live webinar on September 20, 2024 at 2 p.m. EDT/6 p.m. UTC on “Managing Scleroderma and Pulmonary Arterial Hypertension”. Scleroderma is an autoimmune disease in which the immune system attacks various organs and tissues, including the lungs, kidneys,

Join the US Pulmonary Hypertension Association and US National Scleroderma Foundation for the “Managing Scleroderma and Pulmonary Arterial Hypertension” live webinar Friday, Sept. 20, 2024 Read Post »

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK

A survey was conducted by the UK Pulmonary Hypertension Association to explore the potential use of the “clinical frailty scale” alongside the commonly used EmPHasis-10 questionnaire to better understand how pulmonary hypertension affects patients’ quality of life. The scale, already used in other conditions like chronic obstructive pulmonary disease (COPD), assigns a score based on

Attitudes towards the use of the “clinical frailty scale” in pulmonary hypertension, a survey by the UK Pulmonary Hypertension Association, PHA UK Read Post »

Live webinar on exercise rehabilitation for pulmonary hypertension patients organised by the Canadian Pulmonary Hypertension Association, PHA Canada, on October 2nd 2024

The Canadian Pulmonary Hypertension Association, PHA Canada, is organising a live webinar on October 2nd 2024 at 20.30 CET on exercise rehabilitation for pulmonary hypertension patients. Dr. Oh and Dr. Rozenberg, from the University Health Network in Toronto, Ontario, will present the findings from their latest research, shedding light on the benefits and challenges of

Live webinar on exercise rehabilitation for pulmonary hypertension patients organised by the Canadian Pulmonary Hypertension Association, PHA Canada, on October 2nd 2024 Read Post »

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