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 […]

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

15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026

Czech cyclist Lukáš Jakovec is now on day 177 of his extraordinary solo bike journey around Europe, having covered an impressive 15,290 kilometres along the coastline — by the longest route possible. Lukáš is no ordinary cyclist. A multi-talented Czech professional — chef, tennis coach, tournament referee and professional bowler — he embarked on the

15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026 Read Post »

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 »

Martine Rothblatt, founder and CEO of United Therapeutics, included in Forbes’ America’s Greatest Innovators list

Martine Aliana Rothblatt (born 1954) is an American lawyer, author, and entrepreneur. She founded United Therapeutics in 1996, to make medicines for her daughter who suffered from pulmonary arterial hypertension, and is now developing genetically modified pig organs for human transplant. On the latter topic she has written a book titled “Your life or mine

Martine Rothblatt, founder and CEO of United Therapeutics, included in Forbes’ America’s Greatest Innovators list Read Post »

A Comprehensive literature review on the pathophysiology, mechanism, diagnosis, and management of pulmonary arterial hypertension, US Cardiology Review, January 28, 2026

This review covers the full clinical picture of pulmonary arterial hypertension (PAH) — from its pathophysiology and diagnosis through to current and emerging treatments. Understanding the Disease Pulmonary arterial hypertension is driven by progressive structural remodelling of the pulmonary arteries, creating a vicious cycle of vasoconstriction, inflammation, and uncontrolled cell growth that ultimately leads to

A Comprehensive literature review on the pathophysiology, mechanism, diagnosis, and management of pulmonary arterial hypertension, US Cardiology Review, January 28, 2026 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 »

Living with Chronic Lung Allograft Dysfunction (CLAD), a live webinar organised by ESOT, the European Society for Organ Transplant, March 18, 2026

Not to be missed! This live webinar organised by the European Society for Organ Transplant aims to provide an update on the burden of Chronic Lung Allograft Dysfunction (CLAD), emphasizing the patient’s perspective and most important challenges living with CLAD. The webinar will cover respiratory rehabilitation and palliative care measures, including the non-pharmacological and symptomatic

Living with Chronic Lung Allograft Dysfunction (CLAD), a live webinar organised by ESOT, the European Society for Organ Transplant, March 18, 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 »

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 »

“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 »

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 »

Lung Transplant Allocation System Challenges for Pulmonary Arterial Hypertension (PAH) Patients, Letter to the Editor, Transplant International, October 28, 2025

Pulmonary arterial hypertension patients face unique challenges in lung transplantation. Unlike patients with other lung diseases, they often have relatively normal lung function tests but are in critical condition due to heart failure. This means they receive low priority scores in the standard Lung Allocation Score (LAS) system, which was designed primarily for patients with

Lung Transplant Allocation System Challenges for Pulmonary Arterial Hypertension (PAH) Patients, Letter to the Editor, Transplant International, October 28, 2025 Read Post »

Latest edition on the Council of Europe’s European Directorate for the Quality of Medicines and HealthCare (EDQM) Newsletter Transplant 2025 is now available

The Council of Europe’s EDQM (European Directorate for the Quality of Medicines and HealthCare) Newsletter Transplant provides regular updates on transplantation-related developments across Europe. It covers policy, regulation, quality standards, and best practices related to organ donation, allocation, and transplant safety, ensuring harmonisation across European Union member states. Additionally, the newsletter shares news on scientific

Latest edition on the Council of Europe’s European Directorate for the Quality of Medicines and HealthCare (EDQM) Newsletter Transplant 2025 is now available Read Post »

Study provides proof-of-concept that fully automated, algorithm-driven tacrolimus dosing can improve therapeutic drug monitoring in real-world clinical practice, Clinical Pharmacology and Therapeutics, October 11, 2025

Tacrolimus therapeutic drug monitoring is challenging due to high inter- and intra-patient variability. A prospective randomized controlled trial was conducted by researchers at the University Hospital in Leuven, Belgium, on 293 de novo kidney transplant recipients during the first 14 days post-transplant. A fully automated Model-informed precision dosing (MIPD) application (1) was integrated into the

Study provides proof-of-concept that fully automated, algorithm-driven tacrolimus dosing can improve therapeutic drug monitoring in real-world clinical practice, Clinical Pharmacology and Therapeutics, October 11, 2025 Read Post »

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained!

On October 11, the European Directorate for the Quality of Medicines & HealthCare (EDQM), Council of Europe European Donation Day, the Alliance for Pulmonary Hypertension launched a campaign to to honour donors and their families, to celebrate life after transplant, and to call for greater awareness of the urgent need for organ donation. The six

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained! Read Post »

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025

Introduction: A Mission on Two Wheels On October 11, 2025—European Donation Day, organised yearly by the the Council of Europe—the Alliance for Pulmonary Hypertension launched “Wheels of Hope,” an extraordinary campaign that combines athletic endurance, culinary culture, and life-saving advocacy. Czech chef and athlete Lukáš Jakovec embarked on a 9-month cycling journey from Udine, Italy,

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025 Read Post »

Extracorporeal Photopheresis: Emerging Role in Transplantation and Beyond, Transplantation Direct, September 2025

A newly published review in Transplantation Direct explores the growing significance ofextracorporeal photopheresis (ECP), a therapy that modulates immune responses usingpatients’ own treated blood cells. The article, authored by Panagiotis Parsonidis, MSc, and Prof. Thomas Wekerle of the Medical University of Vienna, Austria, highlights extracorporeal photopheresis’s established safety record while pointing to future opportunities for

Extracorporeal Photopheresis: Emerging Role in Transplantation and Beyond, Transplantation Direct, September 2025 Read Post »

Alveolar Septal Width as a Predictor of Chronic Lung Allograft Dysfunction and Survival After Lung Transplantation, Journal of Clinical Medicine, September 9, 2025

Researchers may have found a way to predict which lung transplant patients will develop serious complications before symptoms appear. In a study titled “Increase in Alveolar Septal Width Is a Histological Predictor of Chronic Lung Allograft Dysfunction and Survival in Lung Transplant Recipients—A Longitudinal Study” the authors measure the thickness of air sac walls in lung

Alveolar Septal Width as a Predictor of Chronic Lung Allograft Dysfunction and Survival After Lung Transplantation, Journal of Clinical Medicine, September 9, 2025 Read Post »

Understanding Risk Assessment in Pulmonary Arterial Hypertension, International Society for Heart and Lung Transplant ISHLT Consensus Statement, The Journal of Heart and Lung Transplantation – September 05, 2025

What is pulmonary arterial hypertension and why does risk assessment matter? Pulmonary arterial hypertension is a rare, serious disease where the blood vessels in thelungs become too narrow. This makes the right side of the heart work harder, which overtime can lead to heart failure. Because it can progress quickly, doctors use risk assessment (sometimes

Understanding Risk Assessment in Pulmonary Arterial Hypertension, International Society for Heart and Lung Transplant ISHLT Consensus Statement, The Journal of Heart and Lung Transplantation – September 05, 2025 Read Post »

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