Pulmonary Hypertension Global Patient Survey (PHGPS), key insights and campaign pack

In October 2023, the Pulmonary Vascular Research Institute launched the Pulmonary Hypertension Global Patient Survey (PHGPS) to better understand the reality of what it is like to live with the condition worldwide. Almost 4,000 patients and carers from 90 countries took part in the survey and shared their experiences, which makes the PHGPS one of […]

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Detecting pulmonary hypertension earlier? US Food and Drug Administration (FDA) clears Anumana’s AI echocardiogram algorithm

Anumana has received US Food and Drug Administration (FDA) 510(k) clearance for an AI-powered algorithm that detects early signs of pulmonary hypertension using standard 12-lead echocardiograms (ECGs) — making it the first pulmonary hypertension algorithm cleared for this widely available diagnostic tool. Previously granted US Food and Drug Administration “Breakthrough Device Designation”, the algorithm integrates

Detecting pulmonary hypertension earlier? US Food and Drug Administration (FDA) clears Anumana’s AI echocardiogram algorithm Read Post »

Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project

LINK TO VIDEO TRANSCRIPT Can be translated in 40 languges, check orange button on bottom of page Gergely Meszaros: Good evening and good afternoon to everyone. Welcome to this webinar introducing the Pulmonary Hypertension Expert Patient Academy (PHEPA). I’m delighted to present this new initiative. When ERN-LUNG, the European Reference Network for Rare Respiratory Diseases,

Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project Read Post »

How to explain the complexities of pulmonary hypertension to others, Jolie Lizana, Pulmonary Hypertension News, January 30, 2026

A powerful piece by patient advocate Jolie Lizana recently published on Pulmonary Hypertension News tackles a crucial but often overlooked challenge: how to explain pulmonary hypertension to others when it’s such a complex, invisible disease. Writing from her own 12-year journey living with pulmonary hypertension and heart failure, Lizana realized that even within the pulmonary

How to explain the complexities of pulmonary hypertension to others, Jolie Lizana, Pulmonary Hypertension News, January 30, 2026 Read Post »

Pulmonary hypertension, Nature Reviews Disease Primers, January 4, 2024 

This comprehensive Nature Reviews Disease Primers paper provides an authoritative overview of pulmonary hypertension (PH) globally, with particular attention to disparities between high-income (HICs) and low- and middle-income countries (LMICs). Key Points Classification and Prevalence: pulmonary hypertension is defined as mean pulmonary artery pressure >20 mmHg and comprises five groups: Group 1 (pulmonary arterial hypertension/PAH

Pulmonary hypertension, Nature Reviews Disease Primers, January 4, 2024  Read Post »

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025

A new study published recently on CHEST evaluated whether the Pulmonary Hypertension Functional Class Self-Report (PH-FC-SR)—a patient-reported version of the World Health Organisation (WHO) Functional Class—captures functional status in a way that reflects patients’ real experiences. Study Overview Eighty-nine adults with pulmonary hypertension (Groups 1–5) from the Cleveland Clinic and Mayo Clinic completed an online

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025 Read Post »

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series

The Pulmonary Hypertension Patient Engagement & Empowerment Series is a new evidence-based resource designed to help people living with pulmonary hypertension and their families and carers to be more informed, confident, and empowered. The series was developed by Pulmonary Vascular Research Institute IDDI Patient Engagement & Empowerment Workstream. The series explores 11 core themes, including:

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series Read Post »

From Ancient Mysteries to Modern Miracles: The Incredible Journey of Pulmonary Circulation, Adam Torbicki, “Diagnostics”

INTRODUCTION Ever wondered how we went from completely misunderstanding blood flow for 1,400 years to performing open-heart surgery? A fascinating historical review by Prof. Adam Torbicki, published in Diagnostics (2021), reminds us that while most modern clinicians “look forward, expecting new pathophysiological pathways to be explored,” few take time “to look into the past.” Yet

From Ancient Mysteries to Modern Miracles: The Incredible Journey of Pulmonary Circulation, Adam Torbicki, “Diagnostics” Read Post »

Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 2025

Pulmonary hypertension (PH) is hard to diagnose, especially in places with limited medical resources, but catching it early is crucial for treatment. A group of researchers from China conducted a retrospective cohort study with 4,576 patients, including 2,288 pulmonary hypertension cases, who underwent chest X-rays (CXR) followed by right heart catheterization (RHC) or transthoracic echocardiography

Artificial intelligence applied to chest X-rays may have the potential to detect pulmonary hypertension associated with congenital heart disease (PAH-CHD), CHEST Journal, June 18, 2025 Read Post »

The pulmonary arterial hypertension (PAH) patient perspective, International Journal of Cardiology Congenital Heart Disease, September 2025 edition

This article titled “The pulmonary arterial hypertension patient perspective”, explores the experiences of patients living with pulmonary arterial hypertension associated with Congenital Heart Disease (PAH-CHD). Thanks to medical advances, many individuals with congenital heart disease are now living longer, but face numerous challenges including physical limitations, mental health issues, relationship strains, financial burdens, and family

The pulmonary arterial hypertension (PAH) patient perspective, International Journal of Cardiology Congenital Heart Disease, September 2025 edition Read Post »

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova

Alena’s journey transcends ordinary resilience. After battling pulmonary hypertension for a decade, surviving two double lung transplants, and undergoing over 200 photopheresis sessions, she now embraces life with just 34% lung function—yet lives it fully. Her story bridges cultures, identities, and the profound gift of donated organs. As she marks 11 years since her first

“Beyond Survival: 11 Years, 2 Lung Transplants, and the Quiet Miracle of Breathing”, Alena Adarbehova Read Post »

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog

Maleen Fischer, whose “blue lips” in infancy were dismissed by doctors for nearly four years before receiving a diagnosis of pulmonary arterial hypertension at age four. In a recent article for Cambridge Network News and in a blog for electronRx she shares how despite years on continuous IV medication and isolation during childhood and adolescence,

Living with Pulmonary Arterial Hypertension: Early Diagnosis, Patient Advocacy, and the Role of Technology, Maleen Fischer, Cambridge Network News, electronRx blog Read Post »

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025

Hall Skaara is a pulmonary arterial hypertension patient. His article about life as a patient has been published in the International Journal of Cardiology: Congenital Heart Disease. Hall was diagnosed with idiopathic pulmonary hypertension after cardiac issues and two ablations, but has transformed his diagnosis into an opportunity to help others. Despite physical limitations, he

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025

Natalia Maeva, a patient diagnosed with pulmonary arterial hypertension in 2009, shares a deeply personal account of living with the condition, focusing particularly on the harrowing experience of dyspnoea crises for Breathe. Natalia says that these crises, characterized by a visceral feeling of suffocation, fundamentally transformed her life, forcing her to recalculate every action and

Living with pulmonary arterial hypertension: a patient’s perspective: Natalia Maeva, Breathe, January 21, 2025 Read Post »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

“Make-A-Wish” grants a young Dutch woman waiting for a lung transplant a dream day with her family

Lot is a vibrant young woman with an incredibly positive outlook on life, despite the fact that her daily routine is heavily influenced by her health. Born with a congenital heart defect, Lot was diagnosed with pulmonary arterial hypertension (PAH) at just six years old. Reflecting on her wait for donor lungs, Lot shares: “About

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