A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has […]
PatientView is a UK-based research, publishing, and consultancy group, created out of a belief that the views of patients should be considered in all important healthcare decisions (whether a new healthcare product is being developed, or whether a government is instituting changes to a health system). The recently published 2023 Global report, covering the period
A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may
“Health literacy” is defined as the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions. Lack of health literacy has been linked to poor health outcomes, higher mortality rates, and increased healthcare costs. Kristen Carter, M.S. is the author of a recent article in Psychology
April 28 is ESOT – European Society for Organ Transplantation Action Day. ESOT is calling for enhanced cooperation among EU member states to empower transplant centres in delivering consistent, high-quality transplantation service ahead of the EU elections. ESOT is looking to drive the following 5 actions in the European Parliament between 2024 and 2029: Read
The UK Pulmonary Hypertension Association launched a survey on nutrition and pulmonary arterial hypertension last year in March in which they asked patients about eating habits, food preferences, and cooking or weight management challenges. The findings were announced at the Pulmonary Vascular Research Institute (PVRI)’s congress in January 2024 and, more recently, on social media.
The winter 2023 edition of PHA Europe‘s Mariposa Journal, covering activities of the umbrella association and of its national member associations, was issued on March 30, 2024. The magazine can be downloaded at this link on the PHA Europe website
Winter 2023 edition of PHA Europe’s Mariposa Journal, March 30, 2024 Read Post »
The BEL AIR CENTER is a virtual conference center, divided into several “rooms” where visitors can find and view presentations from leading pulmonary hypertension experts and from PHA Europe’s industry partners, patient association information booths, an art gallery with works by patients and health care professionals, and a networking café. Prof. Marc Humbert, Director of
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
This guide has been created for adult members of the pulmonary hypertension community interested in or engaged in physically intimate and/or sexual activity. The guide addresses, inter alia, some common “myths” about sex in pulmonary hypertension, eg. that if you are a patient you are not sexual or desirable, that there are more important things
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”
“EXPOSURE” (EUPAS19085) is an observational study describing the characteristics, treatment patterns, and outcomes of patients with pulmonary arterial hypertension initiating a new specific therapy in Europe/Canada. In total, 1.944 patients with follow-up information were included. Most study patients were female with WHO functional class II/III symptoms and idiopathic or connective tissue disorder-associated pulmonary arterial hypertension.
“Exploring PH with KiKi the Koala” has been written and designed by 22-year-old Maryam, who was inspired by her little sister Fatima’s experiences with pulmonary hypertension. The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special
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
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
“Navigating Pulmonary Hypertension” is a resource for individuals living with pulmonary hypertension and their loved ones. The 60-page booklet aims to provide answers, support, and hope during the first weeks, months, or years after receiving a pulmonary hypertension diagnosis. The publication offers an overview of the diagnosis, treatment, symptoms, and quality of life. It also
The winter 2023 issue of “Pathlight” addresses longevity and recent advancements. Sign up to receive it at this link on the PHA website
Read the winter issue of “EmPHasis” at this link on the PHA UK website
