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 »

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025

Introduction: A Mission on Two Wheels On October 11, 2025—European Donation Day, organised yearly by the the Council of Europe—the Alliance for Pulmonary Hypertension launched “Wheels of Hope,” an extraordinary campaign that combines athletic endurance, culinary culture, and life-saving advocacy. Czech chef and athlete Lukáš Jakovec embarked on a 9-month cycling journey from Udine, Italy,

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025 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 »

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 »

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025

Anna Jeter, is an artist, writer and photographer living in Excelsior, Minnesota, USA. She was diagnosed with pulmonary arterial hypertension at the age of 4 but only received a heart-lung transplant 19 years later, in 2018. In a recent article for Pulmonary Hypertension News she expresses gratitude for surviving long enough to receive the transplant

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 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 »

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 »

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available

On 15 May 2025, the European Patient Forum (EPF) hosted a webinar to inform patients, health professionals, researchers, and other stakeholders about the key aspects of the European Health Data Space (EHDS). The webinar focused on patients’ rights and the practical changes the regulation introduces. The recording is now available at this link Photo credit:

Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available Read Post »

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025

The annual Board meeting of the ERN-LUNG – European Reference Network for rare respiratory diseases, took place in Paris on March 24-25, 2025, with over 100 participants, not only from the EU but also UK, US and Canada. Two European patient representatives, Pisana Ferrari and Hall Skaara, (2nd and 3rd from left in the cover

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025 Read Post »

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development

Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association, was recently invited to share her experience as a EUPATI Nederland fellow. Pulmonary Hypertension: Rare and Complex In pulmonary hypertension, blood pressure in the lung vessels is too high due to narrowing of the pulmonary arteries. This overloads the right heart chamber, making it increasingly difficult

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development 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 »

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal 

An article published in the Polish Heart Journal on December 23, 2024, titled “Emerging therapies and new directions in the treatment of pulmonary arterial hypertension” points out that the integration of novel therapeutic protocols into everyday medical practice faces various obstacles, particularly when considering regional differences in implementation. The paper draws insights from medical experts

Challenges in implementing the new European clinical guidelines in Central and Eastern Europe: a review from the Polish Heart Journal  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 »

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 »

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