This glossary appears in Pulmonary Hypertension: A Patient’s Survival Guide. It was modified for the web to include links and additional references. The Glossary can be searched on the dedicated page on the PHA Website at this link
The Pulmonary Hypertension Association (PHA) offers education programs for patients and caregivers through online learning, regional forums and conferences. See the dedicated page on the PHA website at this link
The Pulmonary Hypertension Association (PHA) brochure on chronic thromboembolic pulmonary hypertension contains information about diagnosis, treatments and surgical solutions. It can be downloaded from the PHA website at this link
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
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
“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
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
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year. Rare Disease Day was set up and is coordinated by EURORDIS, the European Organisation for Rare Diseases, and 65+ national alliance patient organisation partners. For the 2023 edition 600+ events were held worldwide in 106
International Rare Disease Day, February 29, 2024 Read Post »
What is chronic thromboembolic pulmonary hypertension? The President of PHASSc, the Turkish pulmonary hypertension association, interviews three medical experts for this educational video.
Educational video about chronic thromboembolic pulmonary hypertension by Prof. Dr. Bedrettin Yildizeli from the Marmara University in Turkey, shared by PAHSSc, the Turkish pulmonary hypertension patient association. The video che can be viewed on the PAHSSc YouTube channel at this link
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
The Pulmonary Hypertension association (PHA) has a page devoted to “Living with PH” which addresses pulmonary hypertension issues in teenagers.
Pulmonary hypertension and teenagers Read Post »
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
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
In chronic thromboembolic pulmonary hypertension (Group 4 of the classification of the WHO, World Health Organisation) pulmonary hypertension is due to the mechanical obstruction of the pulmonary circulation by thrombi (blood clots) that have progressively accumulated. In this booklet by AIPI, Italian pulmonary patient association you will find information on: Download the AIPI booklet on
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
Patient booklet on lung transplant by AIPI, Italian pulmonary hypertension association Read Post »
“Pulmonary Hypertension-Get informed and inform” is an educational video about pulmonary hypertension. It can be viewed on the Greek association for Pulmonary Hypertension, Hellenic PH’s Youtube channel at this link
Informative leaflet in Greek on pulmonary hypertension, its symptoms and treatments. Also Includes information about the Greek pulmonary hypertension association, Hellenic PH, and how to support it. This leaflet can be downloaded from the Hellenic PH website at this link.
