Flexible, Accessible, Effective: Patient Perceptions of the Pulmonary Hypertension and Home-Based (PHAHB) Physical Activity Intervention, Pulmonary Circulation, April 29, 2026

A 10-week fully remote, home-based exercise programme for people with pulmonary hypertension (pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) was found to be both acceptable and beneficial, according to a study conducted by a group of Irish researchers, based on qualitative interviews with 13 participants. The programme combined aerobic, resistance and respiratory […]

Flexible, Accessible, Effective: Patient Perceptions of the Pulmonary Hypertension and Home-Based (PHAHB) Physical Activity Intervention, Pulmonary Circulation, April 29, 2026 Read Post »

Remote exercise assessment in pulmonary hypertension, Current Opinions in Pulmonary Medicine, May 7, 2026

Assessment of exercise provides important prognostic information about pulmonary arterial hypertension patients. Researchers from the UK have recently published a review of current digital alternatives to traditional outcome measures. The 6-minute walk test (6MWT) is a key tool for monitoring pulmonary arterial hypertension, but since care is often centralized, patients may only do it once

Remote exercise assessment in pulmonary hypertension, Current Opinions in Pulmonary Medicine, May 7, 2026 Read Post »

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 »

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 »

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship

Natalia Maeva, a dedicated pulmonary hypertension advocate and double lung transplant recipient, has accomplished an incredible milestone as part of the Bulgarian transplant team. Eight years after her life-saving operation, she won a gold medal in badminton at the European Transplant Sports Championship in Lisbon, Portugal, becoming the European champion in the 50-59 age category.

Natalia Maeva’s inspirational path from pulmonary arterial hypertension and double lung transplant to European Championship Read Post »

Live webinar on exercise rehabilitation for pulmonary hypertension patients organised by the Canadian Pulmonary Hypertension Association, PHA Canada, on October 2nd 2024

The Canadian Pulmonary Hypertension Association, PHA Canada, is organising a live webinar on October 2nd 2024 at 20.30 CET on exercise rehabilitation for pulmonary hypertension patients. Dr. Oh and Dr. Rozenberg, from the University Health Network in Toronto, Ontario, will present the findings from their latest research, shedding light on the benefits and challenges of

Live webinar on exercise rehabilitation for pulmonary hypertension patients organised by the Canadian Pulmonary Hypertension Association, PHA Canada, on October 2nd 2024 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 »

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023

The Pulmonary Hypertension Association UK held its first ever ‘Together’ event in October 2023 in partnership with the Sheffield Pulmonary Vascular Disease Unit. Expert talks covered topics including treatments, research, nutrition, and physical activity, with a focus on empowering patients and their loved ones through developing knowledge and understanding. Here are the links to the

All the presentations from the Pulmonary Hypertension Association UK’s gathering are online. Topics include nutrition, physical activity and exercise, treatments and tests, echocardiograms and implantable devices, December 26, 2023 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 »

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!

“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages! Read Post »

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation”

A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation” Read Post »

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension

PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension 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 »

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, April 22, 2023

Healthy lifestyle alongside medical treatment is very important in pulmonary hypertension. The aim of the new “Nutrition and PH” section on the PHA UK’s website is to help patients understand more about nutrition. It contains expert advice, videos, details of the PHA UK research in this area, and the page is open for patient questions.

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, April 22, 2023 Read Post »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment

The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost

Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment Read Post »

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS)

The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS) Read Post »

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