“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, European Heart Journal Supplements

Summary This article for the European Heart Journal Supplements has been written by two pulmonary arterial hypertension patients who describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with pulmonary arterial hypertension are living longer, it is important that they […]

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400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global

400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global association® I’M AWARE THAT I’M RARE: THE PHAWARE® PODCAST is devoted to raising global awareness about pulmonary hypertension with dynamic stories from pulmonary hypertension patients, caregivers and medical professionals from around the world. Over 400 stories have been included in the podcast

400+ pulmonary hypertension patient, caregiver and medical professionals’ stories from the podcast series by phaware global Read Post »

PAHSSc, Turkish pulmonary hypertension association, interview with Noriko Murakami, President of PHA Japan, mother of a young patient who had a lung transplant from a living donor

Noriko Murakami is the President of PHA Japan and the mother of Yukiko, a young PH patient who had a lung transplant surgery from a live donor. The PAHSSc is grateful to Mrs. Noriko Murakami for having agreed to contribute to its magazine Nefes (The Breath ) with insights on lung transplantation from a live

PAHSSc, Turkish pulmonary hypertension association, interview with Noriko Murakami, President of PHA Japan, mother of a young patient who had a lung transplant from a living donor Read Post »

PAHSSc, Turkish pulmonary hypertension association, interview with Aryeh Copperman, the CEO of the PH Israel Patient Association and husband of a pulmonary arterial hypertension patient 

Would you kindly give us some information about yourself? My name is Aryeh Copperman, I am the CEO since 2005 of Isreal’s pulmonary hypertension association. I have a BA in Accounting and information systems, and Masters Degree in Public Health, from the Hebrew University in Jerusalem. I am married with 4 children. My wife has

PAHSSc, Turkish pulmonary hypertension association, interview with Aryeh Copperman, the CEO of the PH Israel Patient Association and husband of a pulmonary arterial hypertension patient  Read Post »

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance

On the occasion of the 2022 edition of the Pulmonary Hypertension Awareness Day, on May 5, HTaPFrance released a short film titled “Regards croisés”, which presents three people who currently have or have had epoprostenol treatment intravenously, using a pump and a centralised catheter. They share their experience with the pump in day to day

“Regards croisés”, a video with testimonials from pulmonary arterial hypertension patients on intra-venous 24/7 prostanoid treatment, by the French pulmonary hypertension association, HTaPFrance Read Post »

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients

PH Human, part of the JanssenWithMe digital platform, was created in partnership with the pulmonary hypertension patient community and is dedicated to supporting people with the condition. It has a particular focus on pulmonary arterial hypertension (Group 1 WHO classification of pulmonary hypertension). It helps share real-life experiences from people living with pulmonary arterial hypertension

“PH Human”, a JanssenWithMe platform provides support resources for people with pulmonary arterial hypertension and features a number of real-life experiences from patients Read Post »

Rosie’s “Breathtaking Story”, submitted by the Belgian French association HTAP Belgique

Rosie Matthysen was a pulmonary hypertension patient and a patient advocate. She was the founder of HTAP Belgique, the Belgian francophone pulmonary hypertension association, one of the founding members of PHA Europe. In this touching video poste on the PHA EUROPE YouTube channel Rosie tells her story and tells us about her life with pulmonary

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