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 Cycle Guidance for Industry, Food and Drug Administration Staff, and […]

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 »

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 »

“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 »

“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 »

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 »

The “Cardiac community”, a patient advocacy group in Nigeria, launches initiative to support patients who can’t pay for their medications

The “Cardiac Community” was founded in 2018 by Ayotunde Omitogun, a pulmonary arterial hypertension patients diagnosed in 2013. It is a community of people passionate about fighting heart disease in Nigeria who engage in heart disease and health awareness, fundraising, advocacy and support for people living with heart disease in Nigeria. The Community has set

The “Cardiac community”, a patient advocacy group in Nigeria, launches initiative to support patients who can’t pay for their medications 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 »

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025

A multi-site qualitative study exploring both patient and provider perspectives on access to and timeliness of pulmonary hypertension (PH) care across the full care continuum—from symptom onset through long-term management was recently published in BMC Pulmonary Medicine. Interviews with 41 participants (21 patients, 20 providers) at three U.S. expert pulmonary hypertension centers revealed persistent delays

Gaps In Access to pulmonary hypertension care and Opportunities for improvement: A multi-site qualitative study, BMC Pulmonary Medicine, July 28, 2025 Read Post »

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 2025

The key findings from the Pulmonary Hypertension Global Patient Survey (PHGPS) adult cohort of 3,329 patients have been published in the ERJ Open Research 2025, highlighting the achievements, shortcomings & regional disparities of clinical care & research globally. The Pulmonary Hypertension Global Patient Survey represents the most extensive survey of its type in the pulmonary

The Pulmonary Hypertension Global Patient Survey: understanding the experiences and perspectives of patients, European Respiratory Journal Open Research 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 »

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 2025

Researchers used computer modeling to compare immediate versus delayed (2-year) treatment with sotatercept, a new pulmonary arterial hypertension medication, to predict lifetime outcomes. Study Method: Building on the findings of the phase 3 STELLAR trial on sotatercept the authors of the study refer to a population health model which was recently published assessing the long-term

Computer modeling used in study to simulate long-term mortality/morbidity in patients with pulmonary arterial hypertension If sotatercept Is delayed, Advances in Therapy, June 17, 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 »

“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 »

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study

The authors of this article, published on the American Journal of Respiratory and Critical Care Medicine on January 13, 2025 say that guidelines recommend patients with pulmonary arterial hypertension be referred to pulmonary hypertension centers, but little is known about where care is actually delivered in the United States. Prescription patterns were used to estimate

Only a minority of US patients receive pulmonary arterial hypertension-specific prescriptions from a pulmonary hypertension center, reveal the findings of a recent study Read Post »

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube

The new pulmonary arterial hypertension treatment sotatercept was approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) at the end of December 2024 – but that doesn’t mean it can now be prescribed. In this short video, the Chair of the UK Pulmonary Hypertension Association Dr Iain Armstrong explains

UK Pulmonary Hypertension Association Chair Dr Iain Armstrong explains what happens next now that sotatercept has been approved in the UK, YouTube Read Post »

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