The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026

On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers, […]

The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 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 »

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 »

“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,

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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 »

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI

The IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute has created an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with pulmonary hypertension to feel more informed, confident and empowered.  Empowerment means gaining the knowledge, skills,

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI Read Post »

Patient empowerment and Patient Reported Outcome Measures (PROMs) highlighted at the “World Symposium on Pulmonary Hypertension Updates” conference, Bologna, July 3-5, 2025

Pisana Ferrari, Secretary General of the Alliance for Pulmonary Hypertension and President of the Italian Pulmonary Hypertension Association AIPI, was invited to deliver the opening presentation on patient perspectives and empowerment at the “World Symposium on Pulmonary Hypertension Updates” conference in Bologna on July 3-5, 2025. Unfortunately, due to health issues, she had to withdraw

Patient empowerment and Patient Reported Outcome Measures (PROMs) highlighted at the “World Symposium on Pulmonary Hypertension Updates” conference, Bologna, July 3-5, 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 »

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe

Introduction The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe 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 »

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5

Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks 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

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