SCOTLAND: It was announced last week (9th February) that sotatercept, the ‘first in class’ pulmonary arterial hypertension treatment, will not be commissioned for use by NHS Scotland at this stage. Our fellow patient advocates at the PHA UK note that whilst this is disappointing news initial refusal is common for new and specialised drugs, and […]
The emPHasis-10 questionnaire is a specialized tool for assessing health-related quality of life in pulmonary arterial hypertension patients. A comprehensive validation process was undertaken by researchers in Thailand including forward-backward translation, expert content validity assessment using Item-Objective Congruence (IOC) index by five specialists, and reliability testing with 20 Thai PAH patients using both internal consistency
In honour of Rare Disease Day we’re excited to unveil the Pulmonary Hypertension Expert Patient Academy (PHEPA) a groundbreaking collaboration between Alliance for Pulmonary Hypertension and PHA Europe, officially endorsed by the European Reference Network for Rare Respiratory Diseases (ERN-LUNG), on February 27th. Download the slides This webinar showcased how this innovative program, whose main
“Ask a PH Doc” is a new program designed by the Canadian pulmonary hypertension association PHA Canada to connect the pulmonary hypertension community with Canadian specialists. One can submit general questions about diagnosis, medications, lifestyle, mental health, caregiving, and navigating the healthcare system in Canada. Every question receives a response, either directly by email, or
Not to be missed! This live webinar organised by the European Society for Organ Transplant aims to provide an update on the burden of Chronic Lung Allograft Dysfunction (CLAD), emphasizing the patient’s perspective and most important challenges living with CLAD. The webinar will cover respiratory rehabilitation and palliative care measures, including the non-pharmacological and symptomatic
A powerful piece by patient advocate Jolie Lizana recently published on Pulmonary Hypertension News tackles a crucial but often overlooked challenge: how to explain pulmonary hypertension to others when it’s such a complex, invisible disease. Writing from her own 12-year journey living with pulmonary hypertension and heart failure, Lizana realized that even within the pulmonary
Cereno Scientific has expanded the development focus of its oral HDAC inhibitor CS014 to include pulmonary hypertension associated with interstitial lung disease (PH-ILD), a severe condition with very limited treatment options and high unmet medical need. Originally developed for idiopathic pulmonary fibrosis (IPF), CS014 targets shared disease mechanisms including vascular remodeling, fibrosis, thrombosis, and inflammation—making
Lisa Harder is PHA Canada’s newest Knowledge Philanthropist. These are specialized volunteers help the organization fulfill its mission. Each Knowledge Philanthropist serves the pulmonary hypertension community in their own way. Depending on their professional background, they develop resources, content from current research projects, help raise awareness, and more! Lisa brings a unique perspective as both
Pulmonary Hypertension News published a report on February 2, 2026, about a case series and literature review found that ECMO (extracorporeal membrane oxygenation)—a life-support machine that temporarily replaces heart and lung function—significantly improves survival in pregnant women with severe pulmonary arterial hypertension (PAH). The study documented five cases where the machine was used as rescue
Louise Bouman attended the Pulmonary Vascular Research Institute conference in Dublin on behalf of the Alliance for Pulmonary Hypertension, of which she is a Board Member. You can find her key highlights summary at this link and the full report below. Louise also attended a “Women in Pulmonary Hypertension” lunch, which you can read about
The February 9 2026 edition of Pulmonary Hypertension News reports that enrollment has been completed in under a year for the PHocus Phase 2 clinical trial testing mosliciguat, a once-daily inhaled therapy for pulmonary hypertension associated with interstitial lung disease (PH-ILD)—a condition where current treatment options remain limited and often poorly tolerated. Developed by Pulmovant,
An Italian study examined whether echocardiographic patterns of right heart changes could improve risk prediction in pulmonary arterial hypertension patients beyond current tools. Researchers defined four phenotypes based on right ventricular size and function, then followed patients for nearly 4 years. They found that these echo-based classifications provided additional prognostic information independent of existing risk
This multicenter, open-label, single-arm phase 3 study aimed to assess the efficacy and safety of sotatercept in Japanese patients with PAH. Forty-six adult Japanese patients with pulmonary arterial hypertension receiving stable background therapy were enrolled in a multicenter, open-label, single-arm phase 3 study to assess the efficacy and safety of sotatercept in Japanese patients. They
The most common genetic cause of heritable pulmonary arterial hypertension is a pathogenic variant in the BMPR2 gene, which encodes a receptor in the TGF-β signaling pathway. While 18 pulmonary arterial hypertension genes have been identified and can be tested simultaneously through gene panel sequencing, approximately 17% of heritable pulmonary arterial hypertension patients show no
Women are disproportionately affected by both pulmonary arterial hypertension (PAH) and breast cancer. BMPR2 (bone morphogenetic protein receptor type 2) mutations are the leading genetic cause of familial pulmonary arterial hypertension. The findings of a study published in Circulation indicate that breast cancer and pulmonary arterial hypertension share a common genetic link involving the BMPR2
Current joint European Society of Cardiology and European Respiratory Society pulmonary hypertension clinical practice guidelines recommend double oral therapy for intermediate-risk pulmonary arterial hypertension patients . They recommend upfront triple combination therapy for high-risk patients only, but retrospective data suggests triple therapy including parenteral prostacyclins may be better. The phase IV, multicentre, prospective, randomised, two-arm,
The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website
A recent study published in Pulmonary Circulation, summarised in an article by Andrea Lob on Pulmonary Hypertension News, found that early diagnosis of pulmonary arterial hypertension (PAH) – within six months of first healthcare contact for symptoms – improves five-year survival by 42 percentage points compared to delayed diagnosis (two years or more). Five-year survival
UC San Diego researchers published findings in Nature Medicine demonstrating that a simple blood test can detect pulmonary arterial hypertension (PAH) before it becomes life-threatening. What follows is a brief summary from an article about this study published on ABC 10 New San Diego (see link below). The test identifies a specific piece of the
This comprehensive Nature Reviews Disease Primers paper provides an authoritative overview of pulmonary hypertension (PH) globally, with particular attention to disparities between high-income (HICs) and low- and middle-income countries (LMICs). Key Points Classification and Prevalence: pulmonary hypertension is defined as mean pulmonary artery pressure >20 mmHg and comprises five groups: Group 1 (pulmonary arterial hypertension/PAH
Pulmonary hypertension, Nature Reviews Disease Primers, January 4, 2024 Read Post »
