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 »

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 »

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 »

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 »

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 »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 2024

Jen Cueva, who is a pulmonary arterial hypertension patient and former nurse, serves as a forum moderator for “Pulmonary Hypertension News”, where she has weekly column. In an article published on September 18, 2024, Jen addressed the very important but little talked about issue of intimacy and sexuality in pulmonary hypertension. Companionship and physical intimacy

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 2024 Read Post »

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation

During the European Respiratory Society 2024 Congress in Vienna, which was held 7-11 September 2024, the European Lung Foundation and ERN-LUNG lung transplantation group presented a new booklet sharing the patient perspective on transplantation. The booklet features an introduction by the European Lung Foundatiion Chair Dimitris Kontopidis and testimonials from lung transplant patients Natalia Maeva

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation Read Post »

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension!

A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension! Read Post »

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free!

Colleen Brunetti started her career as a teacher, but after her pulmonary hypertension diagnosis was forced to leave this field. She began a journey to re-invent herself implementing a holistic lifestyle and went on to become a certified health coach. In her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free! Read Post »

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are

“Exploring PH with KiKi the Koala” has been written and designed by 22-year-old Maryam, who was inspired by her little sister Fatima’s experiences with pulmonary hypertension. The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

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