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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Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal

The PEX-NET (Pulmonary Haemodynamics during Exercise Network) registry enrolled patients who underwent clinically indicated right heart catheterisations both at rest and ergometer exercise from 23 PH centres worldwide. The aim of the study was to explore the prognostic relevance of exercise haemodynamics and its added value to resting haemodynamics are missing. The study finds that

Prognostic relevance of exercise pulmonary hypertension: results of the multicentre PEX-NET Clinical Research Collaboration, European Respiratory Journal Read Post »

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024 

“Health literacy” is defined as the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions. Lack of health literacy has been linked to poor health outcomes, higher mortality rates, and increased healthcare costs. Kristen Carter, M.S. is the author of a recent article in Psychology

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024  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 »

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023

PHA’s “Introduction to Exercise” video series offers five videos and printable resources on the benefits of exercise and pulmonary rehabilitation programs, as well as yoga, strength training and cardio exercise instruction. The five videos cover the following topics IMPORTANT! The PHA specifies that patients must consult their pulmonary hypertension care team before starting to exercise!

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023 Read Post »

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories

http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories Read Post »

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska

The patient booklet titled “An appetite for life”, developed by the Polish pulmonary hypertension association PHA Polska, contains valuable advice about nutrition for patients with pulmonary hypertension. It also provides tips on how patients can adapt their diet to their condition without sacrificing the pleasure of eating well, and features a number of recipes. It

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska Read Post »

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