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 »

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate!

📣 Yesterday, August 14 2023, the The Lancet published a ground-breaking three-paper series on pulmonary hypertension. 1️⃣ In the first paper, Prof. Marc Humbert and colleagues provide an overview of the pathophysiology of pulmonary arterial hypertension, current therapeutic approaches, and emerging treatment options, with a forward-looking discussion of innovative solutions for future clinical trials. We

Lancet publishes ground-breaking three-paper series on pulmonary hypertension, the first of which is co-authored by a patient and patient advocate! Read Post »

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh

Gergely Meszaros, a pulmonary hypertension advocate and Project Manager at the European Reference Network for Rare Lung Diseases, ERN-LUNG, was invited to speak at the Association of Cardiovascular Nursing & Allied Professions (ACNAP) of the European Society of Cardiology Annual Congress in Edinburgh, UK, on June 23-24, 2023. Gergely’s talk was about the 2022 joint European Society

Pulmonary hypertension advocate Gergely Meszaros speaks at the Association of Cardiovascular Nursing & Allied Professions (ACNAP)’s annual conference in Edinburgh Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

Connecting and empowering the pulmonary hypertension community through newsletter exchange

As dedicated volunteers for our pulmonary hypertension patient associations, we understand the immense effort involved in crafting a newsletter. It goes beyond just creating content, which requires extensive research and writing, but also involves sourcing the right photos, designing an attractive layout, printing, and distribution. Newsletters serve as a fantastic way to stay connected with

Connecting and empowering the pulmonary hypertension community through newsletter exchange Read Post »

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation”

A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation” Read Post »

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available

“PARTNERING WITH PATIENTS AND SHARED DECISION MAKING: A NEW PARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 You can also download the slides, recording and text of transcript in pdf format in several languages at this link on the PH-KSP. TRANSCRIPT DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage

Full transcript of the June 6, 2023 AfPH webinar of “Partnering with Patients and Shared Decision Making: A New Paradigm in Pulmonary Hypertension Care?” now available Read Post »

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST

Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network

We are delighted to announce that the Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network, which includes more than 200 respiratory organisations across Europe and beyond, working together with people living with over 40 different lung conditions, including pulmonary hypertension. The European Lung Foundation (ELF)

The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network Read Post »

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 15, 2023

Team PHenomenal Hope, a US national nonprofit advocacy organization for pulmonary hyeprtrension, proudly unveiled its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in pulmonary hypertension on May 12, 2023. The symposium will be held on Friday, December 15, 2023, in Boston, Massachusetts, USA Experts in the field are invited to share original research by August

On May 12 Team PHenomenal Hope announced its inaugural symposium, PHenomenal Hope 2023: Knowledge, Research & Advocacy in Pulmonary Hypertension, due to take place in Boston on December 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 »

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 »

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics

In the abstract to this very interesting article titled “What’s the Role of Time in Shared Decision Making?”, the authors point out that while shared decision making (SDM) is a desirable process and outcome of patient-clinician relationships, time is often insufficient and represents a barrier to SDM. The authors explore alternative ways clinicians can think

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics Read Post »

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine

The authors of a study titled “Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare” presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients’ skills and capacities, they say, alongside modifications to written

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine Read Post »

EURORDIS, European Rare Disease Organisation, Guide on patient involvement in the development of clinical practice guidelines and consensus statements

EURORDIS, the European Rare Disease Organisation, has published a short guide to explain in simple and practical terms how to involve patients and patient representatives in the development of clinical practice guidelines and consensus statements. You may download the guide from the EURORDIS website at this link 

EURORDIS, European Rare Disease Organisation, Guide on patient involvement in the development of clinical practice guidelines and consensus statements Read Post »

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals

“Participatory Medicine” is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare. The Society for Participatory Medicine is a not-for-profit organisation devoted to promoting the practice of participatory medicine, which enables collaborative communication and information sharing among patients, caregivers, and healthcare professionals. The Manifesto of

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals Read Post »

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy

The European Patients’ Forum (EPF), has recently launched a training course for young patient advocates, “Advocacy 101”. The EPF is an umbrella organisation of patient organisations across Europe and across disease-areas. “Advocacy 101” is a free-of-charge, tailored training course built to help gain a solid base of knowledge and understanding of patient advocacy. Some of the key questions

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy Read Post »

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research

In this interesting article titled “Patient Design: The Importance of Including Patients in Designing Health Care”, the authors describe the paradigm shift that has taken place with the rise of internet from the traditional view of medicine, where doctors had little idea what the patient’s problem really was and “only doctors could know what was

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research Read Post »

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF)

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

Youth involvement in patient organisations, an online survey by the European Patients Forum (EPF) Read Post »

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review

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

“Patient engagement and self-management in pulmonary arterial hypertension”, European Respiratory Review Read Post »

TRANSLATE »
Scroll to Top