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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A Pulmonary Hypertension Association (PHA) resource for newly diagnosed pulmonary hypertension patients

The Pulmonary Hypertension Association’s (PHA’s) new publication, “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients” is designed for individuals with pulmonary hypertension and their loved ones to find answers, support and hope during the first few weeks, months or years after a pulmonary hypertension diagnosis. The resource provides an overview of diagnosis, treatment, symptoms

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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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Pulmonary hypertension patient booklet published by RespiFIL, the French national network for rare respiratory diseases, June 15, 2022

The pulmonary hypertension patient booklet published in June 2022 by RespiFIL gives an overview of the disease, its symptoms, its diagnosis and available treatments. There are also tips on how to live better with the disease on a daily basis. It was written in collaboration with health professionals from expert pulmonary hypertension centres and the

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“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association

On the occasion of May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and

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“Exercise your way to better post-transplant health”, by the Council of Europe European Directorate for the Quality of Medicines & HealthCare EDQM

The Council of Europe and its Committee on Organ Transplantation support and recommend physical activity as a major way to improve the health status of transplant patients. Regular light-to-moderate exercise plays a crucial role in restoring both the physical and mental health of transplant recipients. The authors advise organ recipients ask their transplant doctors to

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“La malattia nel racconto dei pazienti”, a collection of patient stories from AIPI, the Italian pulmonary hypertension association

This boklet published by AIPI, the Italian pulmonary hypertension association features a collection of patient testimonies. The aim of the book was to enable patients to understand how it is possible to experience the disease with the same intensity, but approaching it from different points of view. And also to enable them to think of

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Tips for every day life with pulmonary hypertension by AIPI, Italian pulmonary hypertension association

This booklet developed by by AIPI, Italian pulmonary hypertension association, contains pratical advice and tips for day-to-day life with pulmonary arterial hypertension. It stresses the importance of being organised and reserving one’s energies on what really matters. The condition has an impact on many aspects of life and relationships, so it is important to involve

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Patient booklet on lung transplant by AIPI, Italian pulmonary hypertension association

The “Guide to Lung Transplant” by AIPI, Italian patient association provides practical advice on the different phases of the patient journey: the ‘before’, ‘during’ and ‘after’. The last part of the book collects some patient testimonies. Download the AIPI “Guide to lung transplantation” at this link

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Patient booklet on pulmonary hypertension by AIPI, the Italian Pulmonary hypertension association

This booklet published by AIPI, the Italian Pulmonary hypertension association, contains an overview of the different forms of pulmonary hypertension and more specific information about pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension, including treatments and surgical solutions. The booklet can be downloaded from the AIPI website at this link Translation into other languages of

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