The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024

The 5th French Pulmonary Hypertension Network Meeting, convened in Le Kremlin-Bicêtre, France, in 2023, served as a platform to examine current evidence and outstanding questions in pulmonary hypertension, particularly in the context of the recently published 2022 ESC/ERS Guidelines. The French Network is composed of some of France’s key experts in the field of pulmonary […]

The key role of patient associations highlighted during discussions at the 5th French Pulmonary Hypertension Network Meeting, “Respiratory Medicine and Research”, Volume 86, 2024 Read Post »

The UK Pulmonary Hypertension Association Chair, Dr Iain Armstrong, explains what happens next with sotatercept and what will be considered when it comes to making decisions for the UK

The first-in-class pulmonary arterial hypertension drug sotatercept was approved in March 2024 by the Food and Drug Administration (FDA) in the USA and the approval of the European Medicines Agency (EMA) is expected in the next few months. The UK Pulmonary Hypertension Association, PHA UK, has put together a short video, with its Chair Dr

The UK Pulmonary Hypertension Association Chair, Dr Iain Armstrong, explains what happens next with sotatercept and what will be considered when it comes to making decisions for the UK Read Post »

The Committee for Human Medicinal Products (CHMP) of the European Medicines Agency (EMA) has recommended granting a marketing authorisation for Winrevair (sotatercept)

On 28 June 2024 the European Medicines Agency has issued a press release to say that the CHMP (human medicines committee) has recommended granting a marketing authorisation in the European Union (EU) for Winrevair (sotatercept) to treat adult patients with pulmonary arterial hypertension (PAH), in combination with other specific PAH therapies, to improve exercise capacity. This is the first step

The Committee for Human Medicinal Products (CHMP) of the European Medicines Agency (EMA) has recommended granting a marketing authorisation for Winrevair (sotatercept) Read Post »

The US Food and Drug Administration, FDA, approves sotatercept, Merck’s new drug for pulmonary arterial hypertension, March 26, 2024

The US Food and Drug Administration has approved sotatercept, Merck‘s new drug for pulmonary arterial hypertension. It’s commercial name is Winrevair. Read more on the FDA website at this link Sotatercept is an activin receptor type IIA-Fc (ActRIIA-Fc) fusion protein. It was evaluated as an add-on to stable background therapy for the treatment of pulmonary

The US Food and Drug Administration, FDA, approves sotatercept, Merck’s new drug for pulmonary arterial hypertension, March 26, 2024 Read Post »

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024

Delays to diagnosis in pulmonary arterial hypertension still persist today, despite the substantial progress made in the field. This ongoing issue continues to pose a significant challenge, highlighting the need for continued efforts to improve early detection and intervention strategies. Delays in diagnosis not only prolong patient suffering but also lead to missed opportunities for

Multinational real-world survey offers insights into key factors in delays to diagnosis for pulmonary arterial hypertension patients, Therapeutic Advances in Respiratory Disease, February 2024 Read Post »

Cereno Scientific announces FDA approval for expanded access to investigational pulmonary arterial hypertension drug CS1

Cereno Scientific announced on January 31, 2024 that it has received approval from the US Food and Drug Administration (FDA) for expanded access to the investigational drug CS1 in the ongoing Phase II trial for pulmonary arterial hypertension (PAH). This program allows patients who completed the Phase II to continue CS1 therapy. Positive outcomes from

Cereno Scientific announces FDA approval for expanded access to investigational pulmonary arterial hypertension drug CS1 Read Post »

“EXPOSURE” study provides insights into real-world management and outcomes of patients with pulmonary arterial hypertension -“Advances in Therapy”, January 13,2024

“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.

“EXPOSURE” study provides insights into real-world management and outcomes of patients with pulmonary arterial hypertension -“Advances in Therapy”, January 13,2024 Read Post »

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online

Prof. Adam Torbicki’s presentation is titled “Access to care for pulmonary arterial hypertension and chronic thromboembolic pulmponary hypertension”. It can be viewed at this link on Vimeo (you need to register on Vimeo to see it) Prof. Jean-Luc Vachiéry’s presentation is titled “Drug development and clinical trials“. It can be viewed at this link on

Prof. Adam Torbicki explores access to care, Prof. Jean-Luc Vachiéry delves into drug development – watch the highlights from the PHA Europe Annual Conference online Read Post »

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! Read Post »

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023

This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023 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 »

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 »

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!

“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages! Read Post »

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023

A recent article in Drug Topics, reports on the findings of a study presented at the 2023 American Thoracic Society International Conference, held from May 19 to 24 in Washington, DC, which reveals that the majority of patients with pulmonary arterial hypertension (PAH) live in an area that has a shortage of health care professionals,

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023 Read Post »

Findings of a study published in Thorax (BMJ Journals) highlights the importance of integrating pulmonary arterial hypertension patients’ perceptions in the elaboration of clinical trials – May 4, 2023

The aim of this study was to investigate the value given by patients’ and caregivers’ to components of composite outcomes in pulmonary arterial hypertension (PAH) clinical trials. There were 335 participants, of which 257 were patients with pulmonary arterial hypertension. The study findings revealed that most outcomes were considered of major or mild-to-moderate importance to

Findings of a study published in Thorax (BMJ Journals) highlights the importance of integrating pulmonary arterial hypertension patients’ perceptions in the elaboration of clinical trials – May 4, 2023 Read Post »

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023

A recent article titled “Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, published in the New England Journal of Medicine, reports on the results of a multicenter, double-blind, phase 3 trial in which adults with pulmonary arterial hypertension (functional class II or III) who were receiving stable background therapy were randomly assigned

“Phase 3 Trial of Sotatercept for Treatment of Pulmonary Arterial Hypertension”, New England Journal of Medicine, April 20, 2023 Read Post »

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023

The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023 Read Post »

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023

This Phase 1 study evaluated efficacy/safety of inhaled single-dose MK-5475, an investigational, small-molecule stimulator of soluble guanylate cyclase designed for inhaled delivery via a dry-powder inhaler device, in participants with pulmonary arterial hypertension. The findings reveal that treatment with inhaled single-dose MK-5475 reduced pulmonary vascular resistance and increased pulmonary blood volume. Compared to the placebo, MK-5475 was

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023 Read Post »

“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023

An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be

“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023 Read Post »

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review

Abstract Improved care in pulmonary arterial hypertension has led to increased longevity for patients, with a paralleled evolution in the nature of their needs. There is more focus on the impact of the disease on their day-to-day activities and quality of life, and a holistic approach is coming to the front of pulmonary arterial hypertension

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review Read Post »

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