Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project

LINK TO VIDEO TRANSCRIPT Can be translated in 40 languges, check orange button on bottom of page Gergely Meszaros: Good evening and good afternoon to everyone. Welcome to this webinar introducing the Pulmonary Hypertension Expert Patient Academy (PHEPA). I’m delighted to present this new initiative. When ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, […]

Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project Read Post »

Ensuring cultural relevance in pulmonary arterial hypertension QOL questionnaire adaptation: the Thai emPHasis-10 case, Journal of Patient-Reported Outcomes, February 20, 2026

The emPHasis-10 questionnaire is a specialized tool for assessing health-related quality of life in pulmonary arterial hypertension patients. A comprehensive validation process was undertaken by researchers in Thailand including forward-backward translation, expert content validity assessment using Item-Objective Congruence (IOC) index by five specialists, and reliability testing with 20 Thai PAH patients using both internal consistency

Ensuring cultural relevance in pulmonary arterial hypertension QOL questionnaire adaptation: the Thai emPHasis-10 case, Journal of Patient-Reported Outcomes, February 20, 2026 Read Post »

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025

A new study published recently on CHEST evaluated whether the Pulmonary Hypertension Functional Class Self-Report (PH-FC-SR)—a patient-reported version of the World Health Organisation (WHO) Functional Class—captures functional status in a way that reflects patients’ real experiences. Study Overview Eighty-nine adults with pulmonary hypertension (Groups 1–5) from the Cleveland Clinic and Mayo Clinic completed an online

Patient-reported Functional Class (FC) may better reflect pulmonary hypertension burden than physician-assigned Functional Class, CHEST, November 27, 2025 Read Post »

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series

The Pulmonary Hypertension Patient Engagement & Empowerment Series is a new evidence-based resource designed to help people living with pulmonary hypertension and their families and carers to be more informed, confident, and empowered. The series was developed by Pulmonary Vascular Research Institute IDDI Patient Engagement & Empowerment Workstream. The series explores 11 core themes, including:

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series Read Post »

Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025

Despite strong recommendations to assess quality of life in pulmonary arterial hypertension patients from the World Symposia on Pulmonary Hypertension (WSPH) in 2018 and 2024, and from the 2022 European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint pulmonary hypertension guidelines, this evaluation remains rarely implemented in clinical practice. This cross-sectional study of

Real-life use of quality of life questionnaires in pulmonary arterial hypertension in Spain, European Journal of Cardiovascular Nursing, July 7, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025

The key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS) adult cohort of 3,329 patients have been published in the ERJ Open Research 2025, highlighting the achievements, shortcomings & regional disparities of clinical care & research globally. The Pulmonary Hypertension Global Patient Survey represents the most extensive survey of its type in the pulmonary

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025 Read Post »

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development

For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug

The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024

An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that

For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024 Read Post »

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT)

In the past few months, the European Society for Organ Transplant (ESOT) channels have been running a campaign called “Take 2 – the new Me after a transplant”. The campaign seeks to empower patients by offering them valuable and reliable information and resources that can enhance their pre and post-transplant journey and raise public attention

“Take 2 – the new Me after a transplant”, a educational campaign promoted by the European Society for Organ Transplant (ESOT) Read Post »

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! Read Post »

“Patient partnership in cardiovascular clinical trials”, European Heart Journal

This paper, titled “”Patient partnership in cardiovascular clinical trials”, published in the European Heart Journal, assesses current initiatives and identifies opportunities for furthering meaningful patient involvement in cardiovascular clinical research. According to the authors, patients are fundamentally the ultimate beneficiaries of medical treatments, and their active engagement as contributors and decision-makers in the product development

“Patient partnership in cardiovascular clinical trials”, European Heart Journal Read Post »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!

“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages! Read Post »

An awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey, August 21, 2023

The awareness campaign by ESOT – European Society for Organ Transplantation is very relevant to our community as, despite the huge progresses made in the past 30 years in the field of pulmonary hypertension (new treatments, better treatment management, new/improved surgical techniques, etc), lung transplantation still remains an important treatment option for patients who do

An awareness campaign by the European Society for Organ Transplantation (ESOT) provides valuable resources to empower patients and enhance their pre and post-transplant journey, August 21, 2023 Read Post »

EVOLVE, a study by United Therapeutics to evaluate real-world use of next generation pumps for Remodulin was enrolling, August 15, 2023

The aim of the EVOLVE study is to observe and assess drug administration activities, time spent on drug administration activities, and patient-reported outcomes (PROs) including quality of life, treatment satisfaction, and patient perception of devices related to use of United Therapeutics Corporation (UTC)-developed next-generation infusion pumps to administer Remodulin in patients with pulmonary arterial hypertension.

EVOLVE, a study by United Therapeutics to evaluate real-world use of next generation pumps for Remodulin was enrolling, August 15, 2023 Read Post »

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023

This article, published in Advances in Pulmonary Hypertension, refers to a round table covened to discuss the 2022 joint ERS/ESC guidelines on pulmonary hypertension. The round table was attended by Dr Thenappan Thenappan, University of Minnesota, Minneapolis; Dr Marc Humbert, Université Paris-Saclay, Paris; Dr Vallerie McLaughlin, University of Michigan, Ann Arbor; Dr Hilary DuBrock, Mayo

“PH Roundtable: Pros and Cons of the 2022 ERS/ESC Guidelines: Practicality vs Real World View”, Advances in Pulmonary Hypertension, April 13, 2023 Read Post »

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022

The European Society for Organ Transplantation (ESOT) invited Pisana Ferrari to share her personal perspective as a lung transplant patient on the importance of patient engagement throughout the transplant journey (20+ years) and on why strengthening the relationship between the patient and the healthcare professional is so crucial in enhancing the transplant patient experience. The

“Why patient empowerment should be at the heart of organ transplantation: a personal perspective”, by Pisana Ferrari, in Hospital Health Care Europe, October 18, 2022 Read Post »

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS)

The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS) Read Post »

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari

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

“What’s new in the 2022 ESC/ERS clinical guidelines for pulmonary hypertension, and what it was like to be the first patient ever to be included in the guidelines Task Force”, by Pisana Ferrari Read Post »

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