The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission

European Reference Networks (ERNs) represent an innovative approach to addressing rare and complex diseases across Europe. These virtual networks connect specialized healthcare providers, creating a collaborative platform that transcends national boundaries to improve patient diagnosis, treatment, and care. Comprising 24 distinct networks, the European Reference Network is a complex ecosystem involving approximately 1,.600 healthcare professional […]

The first evaluation report of the European Reference Networks since their launch in 2017 has now been published by the EU Commission Read Post »

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK.

Developed by psychologists, and supported by the Pulmonary Hypertension Association UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT) to help you change your thinking habits and behaviours. You can work through them in your own time and in your own home. The programme has been tested with

Overcoming Depression & Low Mood: A self-help programme for people with pulmonary hypertension by the Pulmonary Hypertension Association UK, PHA UK. Read Post »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024

This article, titled “Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions”, published on November 18, 2024 on Circulation, is undoubtedly encouraging and hopeful, showcasing the tremendous progress made in the field of pulmonary hypertension. It highlights how far we’ve come, from no treatments to over a dozen targeted therapies addressing multiple pathways, improving the

Pulmonary Hypertension: From Therapeutic Nihilism to Multiple Therapeutic Interventions, Vallerie V. McLaughlin, Marc Humbert, “Circulation”, November 18, 2024 Read Post »

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024

An article by medical journalist Isabella Hornick recently published on “Healio” reports on a retrospective study which suggests that sodium-glucose cotransporter-2 (SGLT2) inhibitors may significantly reduce all-cause mortality in patients with pulmonary arterial hypertension (PAH). While these findings are promising, further prospective clinical trials are needed to confirm the results and address potential biases, according

SGLT2 Inhibitors (originally designed for treating diabetes-2) show potential to boost survival in pulmonary arterial hypertension patients, Isabella Hornick, “Healio”, October 2024 Read Post »

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension Read Post »

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024

A new multimodal fusion model (MMF-PH) has outperformed transthoracic echocardiography (TTE) in accurately diagnosing pulmonary hypertension (PH) and identifying its subtypes, as presented at the CHEST Annual Meeting in Boston from 6-9 October. By integrating data from demographics, chest X-rays, electrocardiogram, and transthoracic echocardiography, this model reduces the need for invasive right heart catheterization. In

Deep learning model outperforms echocardiography in identifying pulmonary hypertension, CHEST, October 24, 2024 Read Post »

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development

For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development Read Post »

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 »

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