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 »

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation 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 »

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance

We are thrilled to share a remarkable project undertaken by the French Pulmonary Hypertension Association, HTaPFrance. In collaboration with the talented author, Thomas Penin, they have brought to life a poignant story through a graphic novel. The graphic novel revolves around a fictional woman patient grappling with pulmonary arterial hypertension. The protagonist embarks on a

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance Read Post »

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT)

In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT) Read Post »

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association

AIPI, the Italian Pulmonary Hypertension Association, has just released a new booklet in Italian on pulmonary arterial hypertension, featuring a series of questions and answers, interwoven with images. Accompanying the booklet is a glossary of frequently used terms. The booklet aims to provide patients, family members and carers with concise and easy-to-understand information about pulmonary

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association Read Post »

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials

The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials Read Post »

The Pulmonary Hypertension Association UK conducted a study evaluating a self-help programme for patients who live with emotional difficulties, August 26, 2023

Are you currently grappling with pulmonary hypertension and finding that it’s impacting your emotional well-being, possibly leading to feelings of low mood or depression? The Pulmonary Hypertension Association UK has partnered with researchers at the University of Cardiff and Nottingham Trent University to conduct a study evaluating a new self-help programme for pulmonary hypertension patients who live

The Pulmonary Hypertension Association UK conducted a study evaluating a self-help programme for patients who live with emotional difficulties, August 26, 2023 Read Post »

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!

Michael is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started his

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes! Read Post »

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023

The Pulmonary Hypertension Association (PHA) has just share its latest series of informational videos on treating and managing pulmonary hypertension, featuring J. Wesley McConnell, M.D., director of the Norton Healthcare Pulmonary Hypertension Clinic in Louisville, Kentucky. In this seven-part video series, Dr. McConnell provides an overview of managing a PH diagnosis and the various treatment

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023 Read Post »

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump!

IFinding a way for pulmonary hypertension to carry their pump for IV medication in a way that works for them is important. The PHA UK invites patients who have found the “perfect bag”, or maybe even a home made one, to send a photo so they can share it to inspire others. Reply to media@phauk.org

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump! Read Post »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated page about menopause in pulmonary hypertension and features four patient testimonials

Menopause is something that 50% of the population will experience at some point in their life, but it isn’t talked about enough. The PHA UK takes a closer look at menopause, and how it affects women with pulmonary hypertension. Read more at this link on the PHA UK phocusonlifestyle.org web page Four patients have shared

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated page about menopause in pulmonary hypertension and features four patient testimonials Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” 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 »

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada

This resource, developed by the Pulmonary Hypertension Association Canada, PHA Canada, provides a simple explanation, and features great visuals, of the pulmonary circulation mechanism and how pulmonary arterial hypertension affects the heart and lungs. Download the fact sheet at this link

How does pulmonary arterial hypertension affect the heart and lungs? A fact sheet developed by the Pulmonary Hypertension Association of Canada, PHA Canada Read Post »

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada

PHA Canada has developed a “Wellness Wheel”, a tool that can help patients to identify the things that you need to do to stay balanced in these critical areas of life: mental, emotional, physical, environmental, spiritual, recreational and social. This personal assessment tool will allow patients to reflect on each of these areas of their

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada 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 »

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