The European Patient Forum (EPF) published in 2017 a booklet titled “The Added Value of Patient Organizations”, which captures the crucial role of patient organizations in healthcare policy, capacity building, peer support, and research and development, as well as the challenges they face. This booklet highlights the significant impact these organizations have on shaping health […]
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.
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
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
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
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
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
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
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!
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
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
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
📣 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
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
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 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
The Pulmonary Hypertension Association (PHA) brochure on chronic thromboembolic pulmonary hypertension contains information about diagnosis, treatments and surgical solutions. It can be downloaded from the PHA website at this link
An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link
This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date
This Pulmonary Hypertension Association UK (PHA UK) booklet on paediatric pulmonary hypertension was published with the help of experts in paediatric PH and families living with the condition It aims to help you understand more about pulmonary hypertension and the care and support available. You can order a copy by going to the PHA UK’s
