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 […]
The video, posted by mukuls_pharmacology, an educational Instagram account, shows how blood flows through the heart into the lungs (persons dressed in blue) and then back from the lungs, after being enriched with oxygen (persons dressed in red), into the body. Interesting! See video at this link “POUMONS” means “LUNGS” in English
“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
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
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
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
The Belgian Flemish Association, Pulmonale hypertentie vzw, has published an interview with patient advocates Gergely Meszaros (PHA Europe) and Pisana Ferrari (AIPI, Italian Pulmonary Hypertension Association, Italy) in the latest edition of their magazine “ADEMLOS”. In this interview Gergely and Pisana discuss their contribution to the new ESC/ERS pulmonary hypertension guidelines, and in particular: The
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
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
The European Conference on Rare Disease is recognised globally as the largest, patient-led, rare disease policy-shaping event held in Europe. The 2024 edition will be held virtually and in person in Brussels, Belgium, from May 15 to 16. Read more about the conference at this link
European Conference on Rare Diseases (ECRD), Brussels, May 15-16, 2024 Read Post »
On May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in a global event to raise awareness of the disease. World pulmonary Hypertension Day was initiated by the Spanish pulmonary hypertension association ANHP. Many of the patient associations taking part in the celebrations organise sports events using the slogan
World Pulmonary Hypertension Day 2023, May 5 Read Post »
“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
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 »
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
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
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
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
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
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
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
