Members and supporters of the Pulmonary Vascular Research Institute (PVRI) are taking on a global challenge to raise awareness for pulmonary hypertension (PH). So far, 24 participants have pledged a combined 3,901 km (2,438 miles) — enough to travel from Athens to Dublin, crossing 12 countries! Why Dublin? The virtual “arrival” in Dublin is particularly […]
In episode 530 of the phaware® podcast Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST’s First 5 Minutes® program, which helps medical professionals build the skills that lead to a positive relationship with patients from the get-go, creating trust and developing empathy to build rapid rapport and communicate with patients. The goal is to
“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025 Read Post »
Menopause affects many women in the pulmonary hypertension community. This new publication by the UK Pulmonary Hypertension Association, PHA UK, answers common questions, shares real experiences, and brings expert advice to help make things a little easier for patients. Order this free resource on the PHA UK website at this link
The Alliance for Pulmonary Hypertension has released its first ten “PEP Talks” – part of the peer-to-peer patient educational video series launched in May. The name is a fun play on our “Patients Empowering Patients” program, and these short videos share practical insights from the people who really get it – fellow patients and caregivers.
Looking for volunteers for our future “PEP Talks”! Read Post »
A study published in Pulmonary Circulation on June 17, 2025 has examined the relationships between fatigue, pain, anxiety, depression, and quality of life in 68 adults with pulmonary hypertension, recruited from global pulmonary hypertensions associations, who completed a series of self-report measures. The researchers found alarmingly high rates of these symptoms: 86.8% experienced clinical levels
On 15 May 2025, the European Patient Forum (EPF) hosted a webinar to inform patients, health professionals, researchers, and other stakeholders about the key aspects of the European Health Data Space (EHDS). The webinar focused on patients’ rights and the practical changes the regulation introduces. The recording is now available at this link Photo credit:
Introduction The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation
This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.
Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World
In the Editor’s Note to “Mariposa” Hall Skaara, project manager at PHA Europe, highlights the organisation’s key 2024 achievements: Download the full issue of the magazine at this link on the PHA Europe website
EMPHASIS is the quarterly magazine of the UK Pulmonary Hypertension Association, PHA UK. You can read it at this link on the PHA UK website. This edition contains news of patient meetings, an update on sotatercept and an analysis of the future of research, a number of patient stories, an article on self identity and
March is National Nutrition Month in the US, and the Pulmonary Hypertension Association has shared a LinkedIn post highlighting nutrition awareness for pulmonary hypertension patients. The organization encourages patients to be especially mindful of their dietary choices, as certain foods and vitamins can adversely interact with pulmonary hypertension medications, worsen edema (fluid retention), or exacerbate
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
A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the
Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the “Patient Perspectives” Task Force, check out the PHAWARE GLOBAL ASSOCIATION podcast, episode 512 at this link The “Patient Perspectives” Task Force was composed of four patient representatives, three of which are patients (Pisana Ferrari, Italy; Hall Skaara, Norway, and
Every year, the National Audit of Pulmonary Hypertension (NAPH) measures the quality of care provided to pulmonary hypertension patients in the United Kingdom by asking specialist centres to provide data that is then compared against a set of 15 agreed standards. The latest audit, covering 2023-24, shows that high levels of care continue – despite centres seeing
The objective of the study published on February 19, 2025 as a Journal pre proof on Patient Edcuation and Counseling (§), is to develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, based on a systematic review of qualitative literature (64 publications). The authors offer
Medication non-adherence in pulmonary arterial hypertension (PAH) can significantly impact patient outcomes, yet its prevalence and consequences remain understudied. This multi-center registry analysis examined self-reported non-adherence rates among pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension (CTEPH) patients, identifying key socioeconomic predictors and associated healthcare outcomes. Using data from the Pulmonary Hypertension Association Registry (PHAR),
