Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out!

The latest issue of the quarterly Pathlight magazine of the US Pulmonary Hypertension Association, the PHA, celebrates pulmonary hypertension heroes. As National Volunteer Month approaches, the association acknowledges the people who make this organization a success. This issue also includes articles about imaging innovations, managing medication side effects and swimming with subcutaneous therapy.  To receive […]

Latest edition of “Pathlight”, the US Pulmonary Hypertension Association’s quarterly magazine, now out! Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” Read Post »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! Read Post »

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023

Throughout the month of November 2023, the Pulmonary Hypertension Association (PHA) USA shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with the condition participated. See their stories at this link on the Pulmonary Hypertension Association website. Coupled with those stories, the Pulmonary Hypertension Association also

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023 Read Post »

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose

Migdalia Denis, leader of the Latin America Pulmonary Hypertension Association (Sociedad Latina de Hipertensión Pulmonar), was invited on May 18, 2018, to deliver a TEDx talk. Migdalia has recently sent us the link to her talk and asked us to share it on the PH-KSP, in the hope that her message may inspire others to

In a TEDx talk Migdalia Denis, Leader of the Pulmonary Hypertension Latin Society, explores the transformative power of adversity and how it can lead us to discover our true purpose 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 »

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 »

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023

Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023 Read Post »

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 »

“La malattia nel racconto dei pazienti”, a collection of patient stories from AIPI, the Italian pulmonary hypertension association

This boklet published by AIPI, the Italian pulmonary hypertension association features a collection of patient testimonies. The aim of the book was to enable patients to understand how it is possible to experience the disease with the same intensity, but approaching it from different points of view. And also to enable them to think of

“La malattia nel racconto dei pazienti”, a collection of patient stories from AIPI, the Italian pulmonary hypertension association 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

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

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