“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 »

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 »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” 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 »

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 »

“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 »

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