A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website

The Pulmonary Hypertension Awareness Day 2023 toolkit is now available at this link On on May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in activities to raise awareness of the disease. Many of the patient associations taking part in the celebrations organise sports events and using the slogan “Get breathless for PH”. […]

A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website Read Post »

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research

The Patient Engagement Resource Centre (PERC) has selected relevant public resources to help translational researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating. The platform is addressed to researchers but it is also a practical tool for patients to access and

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research 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 »

Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA)

An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link

Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA) Read Post »

Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet

This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date

Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet Read Post »

PHA Canada’s “PH Buddy program”, was developed during the COVID-19 pandemic to help patients stay safe and socially connected in uncertain times

“Staying connected to others in your community — even while practicing social/physical distancing — is an important part of staying well”. This is the rationale behind PHA Canada‘s “PH Buddy program”. Find out more about the program and sign up to become a “PH Buddy” by visiting PHA Canada’s dedicated website page at this link

PHA Canada’s “PH Buddy program”, was developed during the COVID-19 pandemic to help patients stay safe and socially connected in uncertain times Read Post »

Pulmonary hypertension and children, a resource developed by the Pulmonary Hypertension Association UK (PHA UK)

This Pulmonary Hypertension Association UK (PHA UK) booklet on paediatric pulmonary hypertension was published with the help of experts in paediatric PH and families living with the condition It aims to help you understand more about pulmonary hypertension and the care and support available. You can order a copy by going to the PHA UK’s

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How do clinical trials work? Here is a video by top pulmonary hypertension medical expert Vallerie McLaughlin that explains it all! A phaware global initiative

Vallerie McLaughlin, MD from Michigan Medicine’s Cardiovascular Center, discusses the basics of clinical trials in this very informative video care of phaware. Check out the video on the phaware YouTube channel at this link Learn more about phaware at this link

How do clinical trials work? Here is a video by top pulmonary hypertension medical expert Vallerie McLaughlin that explains it all! A phaware global initiative Read Post »

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