The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026

Jan Geissler, Founder and CEO of Patvocates, a think tank, consultancy and social enterprise on patient advocacy and patient engagement in research, has analysed the Food and Drug Administration (FDA)’s newly issued guidance paper titled “Incorporating Voluntary Patient Preference Information over the Total Product Life CycleGuidance for Industry, Food and Drug Administration Staff, and Other […]

The new US Food and Drug Administration (FDA)’s guidance paper on incorporating voluntary patient preference information over the total product cycle, and what It means for patient organisations, March 30, 2026 Read Post »

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 »

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association®

“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association® Read Post »

Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025

Traditional risk models for pulmonary arterials hypertension rely heavily on objective measures. While essential, they often miss the patient’s lived experience—symptoms, quality-of-life challenges, and life-context factors that shape treatment decisions. At the symposium organised on 29 September 2025 by MSD at the European Respiratory Society Annual Congress in Amsterdam, on the topic of “The Value

Including the patient voice into pulmonary arterial hypertension (PAH) risk assessment evaluation, a symposium organised by MSD at the ERS Annual Congress, Amsterdam, September 29, 2025 Read Post »

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025

Jan Geissler is the Founder and CEO of Patvocates, a consultancy and think tank on patient advocacy and patient engagement based in Riemerling, Germany. In an article he co-authored for the Springer Nature journal “The Patient” Geissler and his colleagues argue that meaningful patient involvement in healthcare research and publishing can bridge significant gaps between

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025 Read Post »

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025

Steven Gijssels is Chair of the Patient Expert Center in Belgium. He has recently published a review of the book “The Patient Priority” by Stefan Larsson, Jennifer Clawson and Joshua Kellar, three Boston Consulting Group consultants. The book calls for integrated care, more efficient reimbursement models, and outcome-focused evaluations of healthcare interventions. Tracking patient outcomes

A review of the book “The Patient Priority”, authored by Stefan Larsson, Jennifer Clawson and Joshua Kellar, August 2025 Read Post »

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025

Jan Geissler, Founder and CEO of Patvocates, is co-author of an article titled “Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications” published on July.2, 2025 on The Patient. In a post for LinkedIn Jan says that patients and patient advocates are often missing from the author lists of scientific publications, even if

Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications, The Patient, July 2, 2025 Read Post »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 Read Post »

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 Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension

The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof

The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension 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 »

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal

World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal 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 »

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024 

“Health literacy” is defined as the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions. Lack of health literacy has been linked to poor health outcomes, higher mortality rates, and increased healthcare costs. Kristen Carter, M.S. is the author of a recent article in Psychology

Being knowledgeable about health (“health literate”) does not automatically translate to the ability to manage a disease, “Psychology Today”, May 14, 2024  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 »

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