The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series

The Pulmonary Hypertension Patient Engagement & Empowerment Series is a new evidence-based resource designed to help people living with pulmonary hypertension and their families and carers to be more informed, confident, and empowered. The series was developed by Pulmonary Vascular Research Institute IDDI Patient Engagement & Empowerment Workstream. The series explores 11 core themes, including: […]

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series Read Post »

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association®

“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association® Read Post »

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI

The IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute has created an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with pulmonary hypertension to feel more informed, confident and empowered.  Empowerment means gaining the knowledge, skills,

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI Read Post »

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK

Menopause affects many women in the pulmonary hypertension community. This new publication by the UK Pulmonary Hypertension Association, PHA UK, answers common questions, shares real experiences, and brings expert advice to help make things a little easier for patients. Order this free resource on the PHA UK website at this link

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK Read Post »

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families

This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families Read Post »

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025

Hall Skaara is a pulmonary arterial hypertension patient. His article about life as a patient has been published in the International Journal of Cardiology: Congenital Heart Disease. Hall was diagnosed with idiopathic pulmonary hypertension after cardiac issues and two ablations, but has transformed his diagnosis into an opportunity to help others. Despite physical limitations, he

My journey with pulmonary hypertension: From diagnosis to thriving, Hall Skaara, International Journal of Cardiology Congenital Heart Disease, March 2025 Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024

During a hospital stay described in her December 4, 2024 article for Pulmonary Hypertension News, Jen Cueva, a pulmonary hypertension patient, discovered potentially dangerous errors in her medication records. Her experience, detailed in “Organizing health information is crucial to rare disease management,” demonstrates why maintaining accurate, up-to-date medication lists is essential for patient safety, particularly

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024 Read Post »

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out!

The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out! 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 »

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!

Micheal Garrett 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

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 »

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