The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension

Last year the Canadian Pulmonary Hypertension Association, PHA Canada, conducted a survey to explore the financial and employment impacts of pulmonary arterial hypertension in Canada. The aim of the research was to understand how this condition affects patients’ work and daily activities. The survey also captured information about patients’ need for caregivers and the impact […]

The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension Read Post »

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources

The Stichting Pulmonale Hypertensie / PH Association the Netherlands has expanded their website considerably with articles about different aspects of living with pulmonary hypertension: 🔹 Intimacy and sexuality🔹 Studying with PH🔹 PH and work🔹 Financial issues🔹 Nutrition🔹 Travel and holidays🔹 Children and PH🔹 Exercise and sports🔹 Government support at home🔹 Benefits for disable people NB!

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources Read Post »

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available

“Navigating Pulmonary Hypertension” is a resource for individuals living with pulmonary hypertension and their loved ones. The 60-page booklet aims to provide answers, support, and hope during the first weeks, months, or years after receiving a pulmonary hypertension diagnosis. The publication offers an overview of the diagnosis, treatment, symptoms, and quality of life. It also

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available Read Post »

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023

The findings of the UK Pulmonary Hypertension Association’s major research into people’s lived experiences of pulmonary hypertension have now been published and you can find them here. The survey was completed 859 times, and the results will underpin the UK Pulmonary Hypertension Association’s charitable activity for the next five years. Disclaimer While every possible effort

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023 Read Post »

Common questions for the newly diagnosed, a web page developed by the UK Pulmonary Hypertension Association, PHA UK

The PHA UK’s website features a page dedicated to frequently asked questions by the newly diagnosed with pulmonary arterial hypertension, including: how to explain to people, in a simple way, what it is, what comes after diagnosis, what the currently available treatments are and what the general outlook for people with pulmonary hypertension is. The

Common questions for the newly diagnosed, a web page developed by the UK Pulmonary Hypertension Association, PHA UK 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 »

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada

A diagnosis of pulmonary hypertension is life-changing and can significantly impact all aspects of a person’s life. This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides answers to a few frequently asked questions to help patients get started on their journey. Download the resource at this link on the PHA Canada website

Information resource for newly diagnosed pulmonary hypertension patients and their caregivers, by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU

The European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU 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 »

“Impact of Pulmonary Arterial Hypertension on Employment, Work Productivity, and Quality of Life – Results of a Cross-Sectional Multi-Center Study”, Frontiers in Psychiatry

Data on burden of pulmonary arterial hypertension are mostly limited to physical and clinical endpoints as well as quality of life, and research on employment, work productivity, and educational background is scarce, say the authors of this article for “Frontiers in Psychiatry”. The aim of this study was to assess the impact of pulmonary arterial

“Impact of Pulmonary Arterial Hypertension on Employment, Work Productivity, and Quality of Life – Results of a Cross-Sectional Multi-Center Study”, Frontiers in Psychiatry Read Post »

A Pulmonary Hypertension Association (PHA) resource for newly diagnosed pulmonary hypertension patients

The Pulmonary Hypertension Association’s (PHA’s) new publication, “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” is designed for individuals with pulmonary hypertension and their loved ones to find answers, support and hope during the first few weeks, months or years after a pulmonary hypertension diagnosis. The resource provides an overview of diagnosis, treatment, symptoms

A Pulmonary Hypertension Association (PHA) resource for newly diagnosed pulmonary hypertension patients Read Post »

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review

A large-scale international survey carried out in 2011 investigated four key areas affected by pulmonary arterial hypertension: physical and practical, emotional, social, and information needs and provided new insights into patients’ and carers’ experiences of living with the disease. Citation “Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, Loïc Guillevin, Iain

“Understanding the impact of pulmonary arterial hypertension on patients’ and carers’ lives”, a large-scale international survey on the impact of the disease on patients’ and carers’ lives”, European Respiratory Review Read Post »

TRANSLATE »
Scroll to Top