Global, regional, and national burden of pulmonary arterial hypertension, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021, The Lancet Respiratory Medicine, October 18, 2024

In a large study published on the The Lancet Respiratory Medicine on October 18, 2024, epidemiological and vital registry data were analysed to estimate the non-fatal and fatal burden of pulmonary arterial hypertension, using standard GBD (Global Burden of Diseases) modelling approaches. 🔹 The aim of this investigation was to better characterise the worldwide epidemiology […]

Global, regional, and national burden of pulmonary arterial hypertension, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021, The Lancet Respiratory Medicine, October 18, 2024 Read Post »

The global burden of pulmonary arterial hypertension: profound but improving?, The Lancet Respiratory Medicine, October 18, 2024

An article titled “The global burden of pulmonary arterial hypertension: profound but improving?”, was published on October 18, 2024, on the The Lancet Respiratory Medicine. The authors are Joe Newman,Pulmonary Vascular Disease Unit, Royal Papworth Hospital, Cambridge, UK, Department of Medicine, University of Cambridge, Cambridge, UK and Joanna Pepke-Zaba, Pulmonary Vascular Disease Unit, Royal Papworth

The global burden of pulmonary arterial hypertension: profound but improving?, The Lancet Respiratory Medicine, October 18, 2024 Read Post »

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information

Patients worldwide are increasingly switching from Dr. Google to Dr. Chat GPT. A recent article titled “Trustworthiness, Value, Danger, and Readability of ChatGPT-Generated Responses to Health Questions Related to Pulmonary Arterial Hypertension”, published in the Cureus Journal of Medical Science on October 14, 2024, aimed to determine how well ChatGPT could accurately and consistently respond

From Dr. Google to Dr. ChatGPT: Evaluating the Credibility of ChatGPT for Pulmonary Arterial Hypertension Information Read Post »

Economic Burden Associated with Pulmonary Arterial Hypertension in the United States, Pharmacoeconomics, October 12, 2024

A study published on Pharmacoeconomics on October 12 reveals that pulmonary arterial hypertension continues to be associated with a very high economic burden and healthcare resource utilization across all payer types within the US healthcare system. The study included 11,670 patients enrolled in Medicare Fee-for-Service, 1,021 patients enrolled in Medicare Advantage, 274 patients enrolled in

Economic Burden Associated with Pulmonary Arterial Hypertension in the United States, Pharmacoeconomics, October 12, 2024 Read Post »

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA

Between 0.5% and 5% of people who experience a pulmonary embolism (a blood clot) later develop chronic thromboembolic pulmonary hypertension (CTEPH). Learn more about pulmonary embolism and the risk for chronic thromboembolic pulmonary hypertension in the free Pulmonary Hypertension Association USA brochure titled “What You Need to Know After a Pulmonary Embolism” available at this

“What You Need to Know After a Pulmonary Embolism”, a new resource by the Pulmonary Hypertension Association, USA Read Post »

“A new day has come: Sotatercept for the treatment of pulmonary arterial hypertension”, The Journal of Heart and Lung Transplantation, October 4, 2024

A new day has come: Sotatercept for the treatment of pulmonary arterial hypertension”, The Journal of Heart and Lung Transplantation , October 4, 2024: a state-of-the-art review which summarizes the current understanding of the mechanism of action of sotatercept, the impact on outcomes that improve how patients feel, function, and survive, and the safety and

“A new day has come: Sotatercept for the treatment of pulmonary arterial hypertension”, The Journal of Heart and Lung Transplantation, October 4, 2024 Read Post »

A Belgian consensus paper on sotatercept for the treatment of pulmonary arterial hypertension, “Acta Cardiologica”, October 4, 2024

A new study published in Acta cardiologica on October 4, 2024, reviews the current evidence on sotatercept and provides a Belgian perspective on its place in the future treatment strategy for pulmonary arterial hypertension. We are delighted to see that two patients from Belgium are included as co-authors. Wendy Vansteenkiste is the President of the

A Belgian consensus paper on sotatercept for the treatment of pulmonary arterial hypertension, “Acta Cardiologica”, October 4, 2024 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 »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 2024

Jen Cueva, who is a pulmonary arterial hypertension patient and former nurse, serves as a forum moderator for “Pulmonary Hypertension News”, where she has weekly column. In an article published on September 18, 2024, Jen addressed the very important but little talked about issue of intimacy and sexuality in pulmonary hypertension. Companionship and physical intimacy

How music can affect intimacy and sex while living with pulmonary hypertension, Jen Cueva, Pulmonary Hypertension News, September 18, 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 »

“Gaps in evidence in the treatment of prevalent patients with pulmonary arterial hypertension at intermediate risk: An expert consensus”, Vascular Pharmacology, September 10, 2024

Abstract “Despite the innovations introduced in the 2022 European Society of Cardiology/European Respiratory Society Guidelines on Pulmonary Hypertension, risk discrimination and management of pulmonary arterial hypertension patients at intermediate risk still represents a grey zone. Additionally, clinical evidence derived from currently available studies is limited. This expert panel survey intends to aid physicians in choosing

“Gaps in evidence in the treatment of prevalent patients with pulmonary arterial hypertension at intermediate risk: An expert consensus”, Vascular Pharmacology, September 10, 2024 Read Post »

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation

During the European Respiratory Society 2024 Congress in Vienna, which was held 7-11 September 2024, the European Lung Foundation and ERN-LUNG lung transplantation group presented a new booklet sharing the patient perspective on transplantation. The booklet features an introduction by the European Lung Foundatiion Chair Dimitris Kontopidis and testimonials from lung transplant patients Natalia Maeva

New European Lung Foundation (ELF) and ERN-LUNG booklet highlights patient perspectives on lung transplantation Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out

The Argentinian Pulmonary Hypertension Association – Hipertension Pulmónar Argentina – has just released the tenth edition of the RESPIRO2 Magazine, featuring important information about pulmonary hypertension. This edition features articles about: Read this edition of RESPORO2 and past editions at this link on the Hipertension Pulmónar Argentina website.

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out Read Post »

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024

An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024 Read Post »

Hungarian EU Council Presidency (July-December 2024) issues concept paper urging embrace of innovation, legal reforms, and improved education in transplantation

The Concept Paper issued by the Ministry of the Interior of the Hungarian government, holding the European Council Presidency from July to December 2024, outlines a comprehensive strategy that encompasses increased organ availability, enhanced efficiency and accessibility of transplant systems, and the improvement of quality and safety standards. It stands as a call to action

Hungarian EU Council Presidency (July-December 2024) issues concept paper urging embrace of innovation, legal reforms, and improved education in transplantation Read Post »

Recent report reveals wide regional variability in access to pulmonary endarterectomy (PEA) and balloon pulmonary angioplasty (BPA) for chronic thromboembolic pulmonary hypertension (CTEPH)

The CLARITY survey, the findings of which were published in the Pulmonary Circulation April 2024 issue (link), aimed to collect data on current chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis, treatment, and management, and to identify unmet medical needs. Conducted from September 2021 to May 2022, the survey targeted hospital-based medical specialists via Scientific Societies and

Recent report reveals wide regional variability in access to pulmonary endarterectomy (PEA) and balloon pulmonary angioplasty (BPA) for chronic thromboembolic pulmonary hypertension (CTEPH) Read Post »

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension!

A recent study suggests that Italian composer Antonio Vivaldi, known for his musical genius, may have suffered from pulmonary hypertension. The study was led by the esteemed Italian oncologist, and accomplished musician, Prof. Giuseppe Gullo, and was published in Studi Vivaldiani, the annual journal of the Istituto Italiano Antonio Vivaldi (founded in 1947), which has

Interesting news! Recent research suggests that Italian musical genius Antonio Vivaldi suffered from pulmonary hypertension! Read Post »

How do patient associations view the pharma industry? An independent “PatientView” survey of 2,518 patient groups from 106 countries provides interesting insights

PatientView is a UK-based research, publishing, and consultancy group, created out of a belief that the views of patients should be considered in all important healthcare decisions (whether a new healthcare product is being developed, or whether a government is instituting changes to a health system).  The recently published 2023 Global report, covering the period

How do patient associations view the pharma industry? An independent “PatientView” survey of 2,518 patient groups from 106 countries provides interesting insights Read Post »

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