Amsterdam UMC Lung Congress on Pulmonary Hypertension, March 16-17, 2023

A two day event organised by the Netherlands Respiratory Society entirely dedicated to pulmonary hypertension, featuring some of the key international medical experts in the field as speakers. In response to the new pulmonary hypertension guidelines published in the Fall of 2022 by the European Society of Cardiology (ESC) and European Respiratory Society (ERS), the […]

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Drug-induced Pulmonary Hypertension Symposium: Applying Lessons Learned from The Aminorex Epidemic, April 13-14, 2023

The Drug-induced Pulmonary Hypertension Symposium is taking place in hybrid form (virtual and at Stanford University The rationale for this symposium is to leverage subject-matter expertise from international academic centers and Stanford University, engage the broader academic communities, global organizations (World Health Organization, United States Food and Drug Administration, European Medicines Agency), and stake-holders (patients,

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4th Baltic Pulmonary Hypertension and Circulation Conference, April 21, 2023

The 4th Baltic Pulmonary Hypertension and Circulation Conference took place in Riga, Latvia on April 21, 2023. It provided an opportunity to hear about the latest developments in the treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension from international experts – Prof. Marcin Kurzyna from Poland and Prof. Olivier Sitbon from France, as well as leading experts

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Mapping the main stakeholders in pulmonary hypertension care, a brief summary by Pisana Ferrari

The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the

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“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023

An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be

“The ‘Ten Commandments’ of the 2022 ESC/ERS Guidelines for the diagnosis and treatment of pulmonary hypertension”, European Heart Journal, February 1, 2023 Read Post »

Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA)

An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link

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Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet

This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date

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PHA Canada’s “PH Buddy program”, was developed during the COVID-19 pandemic to help patients stay safe and socially connected in uncertain times

“Staying connected to others in your community — even while practicing social/physical distancing — is an important part of staying well”. This is the rationale behind PHA Canada‘s “PH Buddy program”. Find out more about the program and sign up to become a “PH Buddy” by visiting PHA Canada’s dedicated website page at this link

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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

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“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

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“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 »

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