Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation

A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United […]

Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation 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 »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public 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 »

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 »

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials

The most familiar exercise capacity test in the field of pulmonary arterial hypertension is the 6-Minute Walk Test, where patients walk up and down a corridor for 6 minutes while their physiological parameters and distance walked are measured. This test is also used in other, different types of diseases, and Dr Joe Newman, a clinical

Interesting initiative to adapt the 6 minute walk test, PRO measures and finger prick samples for remote use in pulmonary arterial hypertension clinical trials 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 »

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 »

“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 »

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