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 »

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 »

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 Alliance for Pulmonary Hypertension’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants

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’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants Read Post »

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

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

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

What Do Patients Think About Right Heart Catheterizations? Four patients share what it means to them, Journal of Cardiac Failure, November 21, 2025

Right heart catheterization often marks a turning point in the journey of people living with pulmonary hypertension. Yet an important question remains: what do patients actually experience during this procedure, and what kind of support do they need once it’s over? A paper published recently on the Journal of Cardiac Failure features insights from four

What Do Patients Think About Right Heart Catheterizations? Four patients share what it means to them, Journal of Cardiac Failure, November 21, 2025 Read Post »

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association®

“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association® 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 »

Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025

Traditional risk models for pulmonary arterials hypertension rely heavily on objective measures. While essential, they often miss the patient’s lived experience—symptoms, quality-of-life challenges, and life-context factors that shape treatment decisions. At the symposium organised on 29 September 2025 by MSD at the European Respiratory Society Annual Congress in Amsterdam, on the topic of “The Value

Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025 Read Post »

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”.

phaware® global association announces the launch of an impactful new special edition series of our acclaimed podcast, “I’m Aware That I’m Rare,“ shining a spotlight on the urgent and growing crisis of methamphetamine-associated pulmonary hypertension (Meth-PAH). The six-episode series, premiering September 16 and running through October 21, kicks off our 10th season and leads up to November’s Pulmonary Hypertension Awareness Month with

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”. Read Post »

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out

The German pulmonary hypertension association ph e.v. has published the August edition of its magazine “Rundbrief”, very rich in content as always. Key topics covered include: Research and Medical Advances: Clinical Practice: Professional Development: PDF In German available here

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out Read Post »

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025

Anna Jeter, is an artist, writer and photographer living in Excelsior, Minnesota, USA. She was diagnosed with pulmonary arterial hypertension at the age of 4 but only received a heart-lung transplant 19 years later, in 2018. In a recent article for Pulmonary Hypertension News she expresses gratitude for surviving long enough to receive the transplant

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025 Read Post »

“I had a double lung transplant then won silver”, the incredible journey of Catherine Makin, BBC News, August 22, 2025

On BBC News on 22 August 2025, Emma Stanley tells the incredible story of Catherine Makin, a double lung transplant patient. Catherine Makin, 42, a National Health Service (NHS) clerical worker from Great Harwood, Lancashire, has won 10 medals in swimming and table tennis at the British Transplant Games after receiving a double lung transplant

“I had a double lung transplant then won silver”, the incredible journey of Catherine Makin, BBC News, August 22, 2025 Read Post »

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant

Award-winning singer-songwriter Chloe Temtchine has released a new single “Heaven in the Darkest Place” featuring rapper Freeway. The song is inspired by Temtchine’s own near-death experience and life-saving double-lung transplant. Key collaborator: Freeway brings personal significance to the track – he received a kidney transplant in 2019. Broader purpose: The song serves as the official

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant Read Post »

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025

In an article for Pulmonary Hypertension News Colleen Steele reflects on her co-experience with her husband, Brian, concerning caregiver stress syndrome, a condition of overwhelming physical, emotional, and mental fatigue, often referred to as caregiver burnout. They describe progressing through three stages of the syndrome. Stage 1 began with their son Cullen’s diagnosis of pulmonary hypertension

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025 Read Post »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 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 »

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families

This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families Read Post »

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