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 »

The US Food and Drug Administration, FDA, approves the single tablet combination macitentan/tadalafil for pulmonary arterial hypertension, March 22, 2024

On March 22, 2024 the Food and Drug Administration (FDA), the US drug regulatory authority, approved the single-tablet macitentan/tadalafil combination (Opsynvi) for pulmonary arterial hypertension. The application to the FDA was submitted by the Janssen Pharmaceutical Companies of Johnson & Johnson on May 30, 2023. The FDA approval is based on the results of the

The US Food and Drug Administration, FDA, approves the single tablet combination macitentan/tadalafil for pulmonary arterial hypertension, March 22, 2024 Read Post »

The Phase 3 clinical trial to evaluate the safety and efficacy of oral inhalation of seralutinib for pulmonary arterial hypertension is enrolling

The PROSERA Phase 3, randomized, double-blind, placebo-controlled study to evaluate the efficacy and safety of the oral Inhalation of seralutinib for the treatment of pulmonary arterial hypertension is currently enrolling. The PROSERA study’s objective is to understand the effect of seralutinib on specific pathways in the body that lead to the inflammation, proliferation and fibrosis

The Phase 3 clinical trial to evaluate the safety and efficacy of oral inhalation of seralutinib for pulmonary arterial hypertension is enrolling Read Post »

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT)

Renamed “Cure HHT” in 2014, the HHT Foundation International was founded by a passionate group of patient families and physicians, who shared a hope for a better future for those with hereditary hemorrhagic telangiectasia (HHT). Since its establishment in 1991, Cure HHT has consistently been at the center of the national (US) and global effort

The Alliance for Pulmonary Hypertension supports Cure HHT’s efforts to direct future research for people with pulmonary arterial hypertension and hereditary hemorrhagic telangiectasia (HHT) 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 »

Coming up soon, the World Symposium on Pulmonary Hypertension 2024, the most important scientific event in the world this field!

The 7th edition of the World Symposium on Pulmonary Hypertension is being held on June 29-30/July 1, 2024, in Barcelona, Spain. The WSPH is the most important scientific event in the field of pulmonary hypertension. It has been convened every five years since the Evian edition in 1998 (including Venice 2003, Dana Point 2008, Nice

Coming up soon, the World Symposium on Pulmonary Hypertension 2024, the most important scientific event in the world this field! 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 »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

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

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! 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 »

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023

Throughout the month of November 2023, the Pulmonary Hypertension Association (PHA) USA shared the stories of people who “Live PHearlessly” to raise awareness of pulmonary hypertension. More than 30 people with the condition participated. See their stories at this link on the Pulmonary Hypertension Association website. Coupled with those stories, the Pulmonary Hypertension Association also

“Live PHearlessly”, a campaign conducted by the Pulmonary Hypertension Association (PHA) USA for Pulmonary Hypertension Awareness Month, November 2023 Read Post »

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant!

Anne-Marie Amilhat, a 73-year-old woman from France, received a diagnosis of pulmonary arterial hypertension in 1980 and underwent heart/lung transplant surgery in 1988. Recently, she joyously marked her 35th transplant anniversary surrounded by family and friends. The celebration was graced by the presence of Prof. Philippe Dartevelle, a thoracic surgeon at Marie Lannelongue Hospital, France,

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant! Read Post »

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension

We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension Read Post »

Prof. Marc Humbert selects his highlights on the topic of pulmonary hypertension from the European Respiratory Society (ERS) 2023 Congress

European Respiratory Society (ERS) Past President Prof. Marc Humbert selects his highlights from the annual congress on the topic of pulmonary hypertension – noting the key messaging and findings from what was presented in this video featured on the ERS Respiratory Channel.

Prof. Marc Humbert selects his highlights on the topic of pulmonary hypertension from the European Respiratory Society (ERS) 2023 Congress 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 »

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management

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

Patient Perspectives in the French RHU DESTINATION 2024 project on Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Management Read Post »

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre

The European Respiratory Society (ERS) has issued an eight-episode series offering summaries of disease specific content from its annual congress which took place in Milan, Italy, September 20-23, 2023 In one of the episodes, European Respiratory Society (ERS) Past President Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre, selects his highlights from

Highlights from the European Respiratory Society (ERS) 2023 Congress on the topic of pulmonary hypertension by Prof. Marc Humbert, Director of the French National Pulmonary Hypertension Centre 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 »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

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