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 »

“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 2025 

In episode 530 of the phaware® podcast Drs. Victor Test, Deborah Levine and Rodolfo Estrada discuss CHEST’s First 5 Minutes® program, which helps medical professionals build the skills that lead to a positive relationship with patients from the get-go, creating trust and developing empathy to build rapid rapport and communicate with patients. The goal is to

“First five minutes”: building patient trust, a PHAWARE GLOBAL podcast, July 22, 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 »

Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025

Health-related quality of life (HRQoL ) is an important outcome measure in pulmonary arterial hypertension research, but an evaluation of which patient questionnaires work best had not been done up to now. Also, different studies use different questionnaires, making it hard to compare results. A systematic review (PROSPERO ID: CRD42024484021) was conducted following Preferred Reporting

Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 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 »

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 »

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024

Access to health care is a broad and complex topic that warrants a clearer definition. What does is actually mean? Is it simply the provision of health services and medicines? An article titled “Access in the rare diseases landscape”, published in The Lancet Global Health October 2024 edition, delves into the different aspects that define

Beyond Provision: A Multidimensional View of Access to Health Care for Rare Diseases, The Lancet Global Health, October 2024 Read Post »

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available

The video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on Pulmonary Hypertension”, which took place on 2 September, 2024, in now available online on the ERS Respiratory Channel at this link Expert panellists Marc Humbert, Anton Vonk Noordegraaf, Ulrich Silvia, Isabel BLANCO VICH and Louise Bouman

Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available 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 »

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024

An article by Jared Kaltwasser, in Managed Healthcare executive in its latest issue, sheds light on the growing restrictions imposed by commercial insurers on treatments for pulmonary arterial hypertension. An examination of 17 major insurance plans from 2017 to 2022 showed a sharp increase in policies with at least one restriction, jumping from 38% to

Impact of insurance restrictions on pulmonary arterial hypertension (PAH) therapies in the US, “Managed Healthcare Executive”, June 21, 2024 Read Post »

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024

A study titled “Patients as teachers: a within-subjects randomized pilot experiment of patient-led online learning modules for health professionals” was published on BMC Education on May 10, 2024. Medical education programs are increasingly including presentations by individuals with lived experiences. The authors of the article say that relying on a limited number of speakers may

Patients as teachers? A pilot experiment of patient-led online learning modules for HCPs in Canada proves the effectiveness of this approach, “BMC Medical Education”, May 10, 2024 Read Post »

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right”

April 7 is the UN “World Health Day”. This date marks the anniversary of the founding of World Health Organization in 1948. Health is a human right: everyone, everywhere, should have access to quality health services. This year’s theme was chosen to champion the right of everyone, everywhere to have access to quality health services, education, and

April 7 is World Health Day 2024, celebrated annually by the World Health Organisation (WHO). This year’s theme is “My health, my right” Read Post »

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