“Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, Respiratory Medicine and Research, November 2023

A recent article titled “Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, published in Respiratory Medicine and Research, summarises the existing literature on the clinical presentation of COVID-19 in patients with pulmonary arterial hypertension, focusing on shared pathobiology, clinical outcomes, potential treatment strategies, and the need for further research in understanding and managing these conditions. […]

“Pulmonary arterial hypertension and COVID-19: piecing the puzzle”, Respiratory Medicine and Research, November 2023 Read Post »

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023

In the age of artificial intelligence, chat bots and automated services, our quest for empathy becomes more pressing than ever. Counterintuitively, Dr. Eric J. Topal, an American cardiologist, scientist, and best selling author, claims that artificial intelligence has the potential to enhance empathy, particularly in the vital relationship between patients and clinicians. In a recent

Artificial intelligence could help restore the essential humaneness in medicine by providing the gift of time, The Lancet, October 21, 2023 Read Post »

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant

A study titled “Cytokines Removal During Ex-Vivo Lung Perfusion: Initial Clinical Experience”, by researchers Boffini et al. was published in August 2023 in Transplant International. Covering a period of 10 years, from 2011 to 2020, research by has demonstrated for the first time – on an unparalleled large case series of 54 lung treatments intended

Findings from a decade-long study, published in the August 2023 edition of “Transplant International”, offer promise for a significant surge in the availability of lungs for transplant Read Post »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

RHU DESTINATION 2024 is a hospital and university research funded by the French government. It is led by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Reference Centre, and coordinated by the Assistance Publique-Hôpitaux de Paris (Bicêtre Hospital). Partners include the University of Paris-Saclay, Inserm, Marie Lannelongue Hospital, as well as three private

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

2023 marks the 40th anniversary of the first successful heart-lung transplant in Europe – on a pulmonary hypertension patient – by legendary thoracic surgeon Prof. Magdi Yacoub

This year marks the 40th anniversary of the first successful heart-lung double transplant for a pulmonary hypertension patient in the United Kingdom by legendary thoracic surgeon Prof. Magdi Yacoub. In the early 1980s, after the successful introduction of the immunosuppressive drug cyclosporin A, Prof. Magdi Yacoub sought to push the boundaries of cardiac surgery. In

2023 marks the 40th anniversary of the first successful heart-lung transplant in Europe – on a pulmonary hypertension patient – by legendary thoracic surgeon Prof. Magdi Yacoub Read Post »

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension

A delightful children’s book titled “Casper – the Bear with Blue Lips” debuted on September 30, 2023, at 11:30 a.m. in Bulgaria’s literary club “Peroto” within the National Palace of Culture (NDK). Authored by Natalia Maeva, an accomplished journalist and (former) patient, President of the Bulgarian Society for Pulmonary Hypertension BSPPH, the book introduces young

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension Read Post »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023

PHA’s “Introduction to Exercise” video series offers five videos and printable resources on the benefits of exercise and pulmonary rehabilitation programs, as well as yoga, strength training and cardio exercise instruction. The five videos cover the following topics IMPORTANT! The PHA specifies that patients must consult their pulmonary hypertension care team before starting to exercise!

“Introduction to Exercise”, a video series by the Pulmonary Hypertension Association (PHA), September 16, 2023 Read Post »

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school

This guide, recently published by the Canadian pulmonary hypertension association, PHA Canada, is designed as a tool to help teachers and school staff learn about pulmonary hypertension and fostering open communication and understanding. The Guide includes the following documents: Read more at this link on the PHA Canada website

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school Read Post »

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5

Huge success for this year’s World Pulmonary Hypertension Day on May 5! The summer edition of the Mariposa Journal reports on the exciting events organised in 22 European countries to celebrate this occasion, and on the social media campaign which accompanied it, which reached an estimated 6 million individuals worldwide. World PH Day is a

The Summer edition of PHA Europe’s “Mariposa Journal” reports on the exciting events held across Europe to celebrate World Pulmonary Hypertension Day, May 5 Read Post »

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023

Advances in Pulmonary Hypertension is the USA Pulmonary Hypertension Association‘s quarterly medical journal, directed by an editorial board of renowned experts with the oversight of PHA’s Scientific Leadership Council. The latest edition, Vol.22, N°2, 2023, features many interesting articles. Topics covered include: Full text of this edition of Advances in Pulmonary Hypertension is available at this link

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023 Read Post »

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023

On August 4, 2023 the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), held an event in Riga, the capital of Latvia, to celebrate its 12th anniversary. Check out our article about this event at this link. The association took this occasion to launch a new and very useful resource for patients. The new booklet,

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023 Read Post »

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!

📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate! Read Post »

Connecting and empowering the pulmonary hypertension community through newsletter exchange

As dedicated volunteers for our pulmonary hypertension patient associations, we understand the immense effort involved in crafting a newsletter. It goes beyond just creating content, which requires extensive research and writing, but also involves sourcing the right photos, designing an attractive layout, printing, and distribution. Newsletters serve as a fantastic way to stay connected with

Connecting and empowering the pulmonary hypertension community through newsletter exchange 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 »

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 »

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska

The patient booklet titled “An appetite for life”, developed by the Polish pulmonary hypertension association PHA Polska, contains valuable advice about nutrition for patients with pulmonary hypertension. It also provides tips on how patients can adapt their diet to their condition without sacrificing the pleasure of eating well, and features a number of recipes. It

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska Read Post »

Guide to the emotional aspects of living with pulmonary arterial hypertension, a booklet by AIPI, Italian pulmonary hypertension association

The aim of this booklet is to help people diagnosed with pulmonary arterial hypertension, and those around them, to better understand the journey that the disease entails, from the uncertainty associated with the appearance of the first symptoms to coming to terms with the diagnosis and a new life with the disease. It is not

Guide to the emotional aspects of living with pulmonary arterial hypertension, a booklet by AIPI, Italian pulmonary hypertension association Read Post »

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