A roundtable of US pulmonologists discusses sotatercept, de-escalation, and the limits of upfront therapy for pulmonary arterial hypertension, HCP Live, June 22, 2026

An HCPLive roundtable of pulmonologists from UCLA, Cedars-Sinai, and community practices discussed optimizing pulmonary arterial hypertension management. Key points: Treatment sequencing: Upfront dual oral combination therapy (ERA + PDE5 inhibitor) remains standard for non-high-risk patients, though sotatercept hasn’t formally displaced it despite growing clinical interest. An Italian study cited at the roundtable found about a […]

A roundtable of US pulmonologists discusses sotatercept, de-escalation, and the limits of upfront therapy for pulmonary arterial hypertension, HCP Live, June 22, 2026 Read Post »

The “Cardiac community”, a patient advocacy group in Nigeria, launches initiative to support patients who can’t pay for their medications

The “Cardiac Community” was founded in 2018 by Ayotunde Omitogun, a pulmonary arterial hypertension patients diagnosed in 2013. It is a community of people passionate about fighting heart disease in Nigeria who engage in heart disease and health awareness, fundraising, advocacy and support for people living with heart disease in Nigeria. The Community has set

The “Cardiac community”, a patient advocacy group in Nigeria, launches initiative to support patients who can’t pay for their medications Read Post »

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025

A multi-site qualitative study exploring both patient and provider perspectives on access to and timeliness of pulmonary hypertension (PH) care across the full care continuum—from symptom onset through long-term management was recently published in BMC Pulmonary Medicine. Interviews with 41 participants (21 patients, 20 providers) at three U.S. expert pulmonary hypertension centers revealed persistent delays

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025

The key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS) adult cohort of 3,329 patients have been published in the ERJ Open Research 2025, highlighting the achievements, shortcomings & regional disparities of clinical care & research globally. The Pulmonary Hypertension Global Patient Survey represents the most extensive survey of its type in the pulmonary

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025 Read Post »

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025

Researchers used computer modeling to compare immediate versus delayed (2-year) treatment with sotatercept, a new pulmonary arterial hypertension medication, to predict lifetime outcomes. Study Method: Building on the findings of the phase 3 STELLAR trial on sotatercept the authors of the study refer to a population health model which was recently published assessing the long-term

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025 Read Post »

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study

The authors of this article, published on the American Journal of Respiratory and Critical Care Medicine on January 13, 2025 say that guidelines recommend patients with pulmonary arterial hypertension be referred to pulmonary hypertension centers, but little is known about where care is actually delivered in the United States. Prescription patterns were used to estimate

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study Read Post »

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube

The new pulmonary arterial hypertension treatment sotatercept was approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) at the end of December 2024 – but that doesn’t mean it can now be prescribed. In this short video, the Chair of the UK Pulmonary Hypertension Association Dr Iain Armstrong explains

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube Read Post »

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal 

An article published in the Polish Heart Journal on December 23, 2024, titled “Emerging therapies and new directions in the treatment of pulmonary arterial hypertension” points out that the integration of novel therapeutic protocols into everyday medical practice faces various obstacles, particularly when considering regional differences in implementation. The paper draws insights from medical experts

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal  Read Post »

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024

Access to health care is a broad and complex topic that warrants a clearer definition. What does is actually mean? Is it simply the provision of health services and medicines? An article titled “Access in the rare diseases landscape”, published in The Lancet Global Health October 2024 edition, delves into the different aspects that define

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024 Read Post »

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal

World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal Read Post »

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024

An article by Jared Kaltwasser, in Managed Healthcare executive in its latest issue, sheds light on the growing restrictions imposed by commercial insurers on treatments for pulmonary arterial hypertension. An examination of 17 major insurance plans from 2017 to 2022 showed a sharp increase in policies with at least one restriction, jumping from 38% to

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024 Read Post »

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right”

April 7 is the UN “World Health Day”. This date marks the anniversary of the founding of World Health Organization in 1948. Health is a human right: everyone, everywhere, should have access to quality health services. This year’s theme was chosen to champion the right of everyone, everywhere to have access to quality health services, education, and

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right” Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages 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 »

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023

The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023 Read Post »

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023

The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives

The International Respiratory Coalition (IRC) launches it official Manifesto for Better Respiratory Health at its Summit on 26-27 June 2023 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 »

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred

On Wednesday April 26, 2023, the European Commission adopted a proposal for a new Directive and a new Regulation, which revise and replace the existing general pharmaceutical legislation. The EU Commission’s proposed revisions include proposals to update the EU’s Regulations on Orphan Medicinal Products and Paediatric Medicines, which are very important to Europe’s population of

Proposed revision of EU pharmaceutical laws, released on April 26, 2023, will contribute to making the EU regulatory framework more patient-centred Read Post »

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care.

The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results

On April 20, 2023, the Pulmonary Vascular Research Institute (PVRI) launched a survey about access to pulmonary hypertension education, diagnosis and care. Read Post »

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022

In a recent article for the European Public Health Alliance (EPHA) website guest authors Devi Mey, CEO, and Luciano Potena, President, of the European Society for Organ Transplant (ESOT), point out that gender, socioeconomic status, ethnicity, place of residence, level of health literacy, patient awareness, and inadequate training of healthcare providers (HCP) all exert a

“Is Organ Transplant equal for everyone?” Guest article by Devi Mey, CEO, and Luciano Potena, President, European Society for Organ Transplantation (ESOT), December 15, 2022 Read Post »

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