Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska

The patient booklet titled “An appetite for life”, developed by the Polish pulmonary hypertension association PHA Polska, contains valuable advice about nutrition for patients with pulmonary hypertension. It also provides tips on how patients can adapt their diet to their condition without sacrificing the pleasure of eating well, and features a number of recipes. It […]

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska Read Post »

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant

Starting on April 15, 2023, 46 member countries came together to compete in 17 sporting disciplines at the 24th World Transplant Games. This is the first reunion of the community of transplant recipients, living donors, donor families, friends and supporters after four years. For over 40 years, the World Transplant Games have demonstrated that health and fitness

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant Read Post »

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research

The Patient Engagement Resource Centre (PERC) has selected relevant public resources to help translational researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating. The platform is addressed to researchers but it is also a practical tool for patients to access and

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research Read Post »

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023

Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023 Read Post »

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023

Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023 Read Post »

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023

The UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023 Read Post »

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023

The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023 Read Post »

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023

HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023 Read Post »

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023

A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023 Read Post »

How useful can the new AI “ChatGPT” be in health care? And how trustworthy? Forbes explores its potential uses in healthcare in an article published on March 2, 2023

Commentary by Pisana Ferrari There is a huge amount of hype at the present moment around “ChatGPT”, a natural language processing model developed by OpenAI. ChatGPT interacts in a conversational way and replies to questions from users by tapping into the gigantic amounts of data, vocabulary and information that has been “fed” into it by

How useful can the new AI “ChatGPT” be in health care? And how trustworthy? Forbes explores its potential uses in healthcare in an article published on March 2, 2023 Read Post »

Interview with the President of AIPI, Italian pulmonary hypertension association for “Italian Medical News”, March 1, 2023, on the role of patient associations

In this interview for Italian Medical News, Pisana Ferrari, President of AIPI, Associazione Ipertensione Polmonare Italiana describes: Full text of article, published March 1st, at this link on the Italian Medical News website

Interview with the President of AIPI, Italian pulmonary hypertension association for “Italian Medical News”, March 1, 2023, on the role of patient associations Read Post »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,

European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023 Read Post »

World renowned pulmonary hypertension expert Prof. Marc Humbert elected Dean of the Paris-Saclay (FR) Faculty of Medicine, February 15, 2023

The members of the Faculty Council unanimously elected on Wednesday 15 February 2023Prof. Marc Humbert as Director of the Faculty of Medicine. This election follows the departure of Prof. Didier Samuel, who was appointed President and CEO of Inserm on 1 February 2023. Professor of Pneumology at the University of Paris-Saclay, Marc Humbert is Director

World renowned pulmonary hypertension expert Prof. Marc Humbert elected Dean of the Paris-Saclay (FR) Faculty of Medicine, February 15, 2023 Read Post »

The Pulmonary Hypertension Association, PHA, is accepting applications for its new grant to support junior pulmonary hypertension researchers. Applications are due March 20, 2023

This research award grants up to $65,000 for one year and supports junior pulmonary hypertension scientists. Proposals must be pulmonary hypertension related research projects that have been favourably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary

The Pulmonary Hypertension Association, PHA, is accepting applications for its new grant to support junior pulmonary hypertension researchers. Applications are due March 20, 2023 Read Post »

Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment

The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost

Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment Read Post »

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023

This Phase 1 study evaluated efficacy/safety of inhaled single-dose MK-5475, an investigational, small-molecule stimulator of soluble guanylate cyclase designed for inhaled delivery via a dry-powder inhaler device, in participants with pulmonary arterial hypertension. The findings reveal that treatment with inhaled single-dose MK-5475 reduced pulmonary vascular resistance and increased pulmonary blood volume. Compared to the placebo, MK-5475 was

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023 Read Post »

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

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

“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 »

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships

The Congrès de Pneumologie de Langue Française (CPLF) is the 3rd largest world pulmonology congress, after the ATS (American Thoracic Society) and the ERS (European Respiratory Society). This year it was held from 27 to 29 January 2023 in the city of Marseille. Prof. Marc HUMBERT, President of the European Respiratory Society, coordinator of RespiFIL,

In his speech at the CPLF, French Language Pulmonology Congress, Prof. Marc Humbert highlights the importance of expert center–patient association partnerships Read Post »

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