The Pulmonary Hypertension Association (PHA)’s “Email PHriends” initiative offers patients, caregivers and parents support with a caring and knowledgeable member of the community

The Pulmonary Hypertension Association (PHA)’s “Email PHriends” are volunteer patients and caregivers who are available to answer questions and chat through email with other members of the pulmonary hypertension community over a period of three months. The PHA specifies that the “Email PHriends” cannot offer medical advice but can share what they’ve learned along the […]

The Pulmonary Hypertension Association (PHA)’s “Email PHriends” initiative offers patients, caregivers and parents support with a caring and knowledgeable member of the community Read Post »

Pulmonary hypertension and children, a resource developed by the Pulmonary Hypertension Association UK (PHA UK)

This Pulmonary Hypertension Association UK (PHA UK) booklet on paediatric pulmonary hypertension was published with the help of experts in paediatric PH and families living with the condition It aims to help you understand more about pulmonary hypertension and the care and support available. You can order a copy by going to the PHA UK’s

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“Overcoming Worry & Anxiety”, a free self help programme developed by the Pulmonary Hypertension Association UK (PHA UK)

This free four-week self-help programme, developed by Pulmonary Hypertension Association UK (PHA UK),consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help take control of problematic worry and anxiety. The programme has been developed with a team of clinical psychologists specifically for people with pulmonary hypertension, and has been tried and

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Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)

With this survey the EPF Youth Group (YG) of the European Patients Forum (EPF) aims to collect key information on the importance and impact of young patient’s involvement in patient organisations. It is not always easy to involve young patients in patient organisations, as many of us who run patient associations well know. We hope this survey

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Study evaluating a digital health system (PAHcare™) for routine care of patients with pulmonary arterial hypertension

The PAHcare™ medical device being assessed in this clinical investigation has been approved in Europe as a Class I investigation medical device as per Medical Devices Directive (93/42/EEC) for its use by pulmonary arterial hypertension patients (26 March 2021, reference number 1291298). The authors say this is the first study that will examine the effects

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“The new 2022 pulmonary hypertension guidelines: some small steps and some giant leaps forward for evidence-based care”, ERS Journal

“This article is not freely available but there is a summary of the content where the author say that one of the most important triumphs of the current 2022 pulmonary hypertension guidelines is an overarching emphasis on multidisciplinary, collaborative and patient-centred care. Indeed, the guidelines were themselves authored, reviewed and endorsed by a broad range

“The new 2022 pulmonary hypertension guidelines: some small steps and some giant leaps forward for evidence-based care”, ERS Journal Read Post »

“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, European Heart Journal Supplements

Summary This article for the European Heart Journal Supplements has been written by two pulmonary arterial hypertension patients who describe the patient experience and explore the ways in which patients are increasingly being given a voice in developing approaches to treatment. As patients with pulmonary arterial hypertension are living longer, it is important that they

“My life with pulmonary arterial hypertension: a patient perspective”, Hall Skaara, Pisana Ferrari, European Heart Journal Supplements Read Post »

“Balloon pulmonary angioplasty versus riociguat for the treatment of inoperable chronic thromboembolic pulmonary hypertension (RACE): a multicentre, phase 3, open-label, randomised controlled trial and ancillary follow-up study”, The Lancet, October 2022

RACE is a (completed) phase 3, multicentre, open-label, parallel-group, randomised controlled trial done in 23 French centres of expertise for pulmonary hypertension enrolling treatment-naive patients aged 18–80 years with newly diagnosed, inoperable chronic thromboembolic pulmonary hypertension and pulmonary vascular resistance of more than 320 dyn·s/cm5. A summary of the article is available on The Lancet

“Balloon pulmonary angioplasty versus riociguat for the treatment of inoperable chronic thromboembolic pulmonary hypertension (RACE): a multicentre, phase 3, open-label, randomised controlled trial and ancillary follow-up study”, The Lancet, October 2022 Read Post »

An edition of the Council of Europe EDQM’s annual “Newsletter Transplant” has been published, September 29, 2022

An edition of the the Council of Europe EDQM’s annual “Newsletter Transplant” was published. It provides comprehensive information and data on donation and transplantation activities in 2021 from 79 countries worldwide. This report is the international reference in monitoring practice in donation and transplantation of substances of human origin. It is produced thanks to the

An edition of the Council of Europe EDQM’s annual “Newsletter Transplant” has been published, September 29, 2022 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

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“Medications for the treatment of pulmonary arterial hypertension: a systematic review and network meta-analysis”, European Respiratory Review

The authors of the study titled “Medications for the treatment of pulmonary arterial hypertension: a systematic review and network meta-analysis” conducted a search on MEDLINE, Embase, the Cochrane Central Register of Controlled Trials and Clinicaltrials.gov, from inception to December 2021, which yielded 5.006 records, of which the full texts of 222 records were reviewed and 53 randomised

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“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari

Clinical practice guidelines present relevant evidence to help health care professionals in making decisions about therapeutic options and include recommendations intended to optimise patient care. They are updated on a regular basis to take into account the latest evidence and practice. The European Society of Cardiology (ESC) and the European Respiratory Society (ERS) joint clinical

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari Read Post »

The Rare Purple Elephant “Pongo” and his role in raising awareness of pulmonary hypertension, an initiative by the Greek pulmonary hypertension association Hellenic PH

Ioanna Alysandratou, a pulmonary hypertension patient and President of Hellenic PH,, is the creator of Pongo, the “rare” purple elephant. Pongo has only a tiny little nostril and struggles to breathe. This is one of the symptoms of pulmonary hypertension, a rare condition affecting the lungs and heart. Pongo has been used in many awareness

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