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 »

Self-management in pulmonary arterial hypertension: insights from patient interviews, Patient Preference and Adherence Journal, January 17, 2026

Twelve pulmonary arterial hypertension patients followed at the Fuwai Central China Cardiovascular Hospital in Zhengzhou City in the Henan Province, China, were interviewed to understand their self-management challenges. The findings were published in the Patient Preference and Adherence Journal on January 17, 2026, and reveal significant barriers to effective disease self-management across two main categories.

Self-management in pulmonary arterial hypertension: insights from patient interviews, Patient Preference and Adherence Journal, January 17, 2026 Read Post »

What Do Patients Think About Right Heart Catheterizations? Four patients share what it means to them, Journal of Cardiac Failure, November 21, 2025

Right heart catheterization often marks a turning point in the journey of people living with pulmonary hypertension. Yet an important question remains: what do patients actually experience during this procedure, and what kind of support do they need once it’s over? A paper published recently on the Journal of Cardiac Failure features insights from four

What Do Patients Think About Right Heart Catheterizations? Four patients share what it means to them, Journal of Cardiac Failure, November 21, 2025 Read Post »

Publication of a new European Medicines Agency (EMA) booklet on medicine safety monitoring

The European Medicines Agency (EMA) has published a new booklet on the safety monitoring of medicines in the European Union. It provides an overview of how the European Medicines Agency and European Union Member States work to ensure that medicines used across Europe remain safe throughout their lifecycle.  The booklet is published on a new

Publication of a new European Medicines Agency (EMA) booklet on medicine safety monitoring Read Post »

US Food and Drug Administration approves YUTREPIA, a treprostinil inhalation powder for pulmonary arterial hypertension and pulmonary hypertension associated with interstitial lung disease

Yutrepia is a dry powder formulation of treprostinil, a prostacyclin analog. It is designed to enhance deep-lung delivery with an easy-to-use device requiring low inspiratory effort. Yutrepia was was tentatively approved by the Food and Drug Administration last year (see our article here), but the agency was waiting for regulatory exclusivity of a competing product

US Food and Drug Administration approves YUTREPIA, a treprostinil inhalation powder for pulmonary arterial hypertension and pulmonary hypertension associated with interstitial lung disease Read Post »

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025

We were unfortunately unable to attend the European Parliament event which took place on March 5, 2025, but have read the minutes with great interest. Based on these we have put together some key takeaways as this topic is very relevant to pulmonary arterial hypertension patients, who are predominantly women. Opening Member of the European

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025 Read Post »

The US Food and Drug Administration (FDA) has accepted the new drug application resubmission for YUTREPIA™ (treprostinil) inhalation powder, March 28, 2025

Link: Liquidia Corporation announced on March 28, 2025, that the US Food and Drug Administration has accepted its resubmitted new drug application for YUTREPIA (treprostinil) inhalation powder. The treatment targets pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD). The FDA had previously granted tentative approval for both indications (see our

The US Food and Drug Administration (FDA) has accepted the new drug application resubmission for YUTREPIA™ (treprostinil) inhalation powder, March 28, 2025 Read Post »

How family dynamics are affected in the case of a genetic pulmonary arterial hypertension diagnosis: interview and focus group highlights, European Respiratory Journal Open research, March 24, 2025

A study titled “Navigating family dynamics and ethical considerations in genetic diagnosis of pulmonary arterial hypertension: insights from in-depth semi-structured interviews”, published on the ERJ Open research on March 24, 2025, examines the impact of genetic diagnosis on families affected by pulmonary arterial hypertension (PAH). Researchers interviewed 63 stakeholders across 53 interviews and focus groups

How family dynamics are affected in the case of a genetic pulmonary arterial hypertension diagnosis: interview and focus group highlights, European Respiratory Journal Open research, March 24, 2025 Read Post »

Jimmy Ford MD discusses the work of the “Patient Perspectives” Taks force at the 7th World Symposium on Pulmonary Hypertension in a podcast for phaware Global Association

Jimmy Ford, MD discusses the 7th World Symposium on Pulmonary Hypertension and his work on the “Patient Perspectives” Task Force, check out the PHAWARE GLOBAL ASSOCIATION podcast, episode 512 at this link The “Patient Perspectives” Task Force was composed of four patient representatives, three of which are patients (Pisana Ferrari, Italy; Hall Skaara, Norway, and

Jimmy Ford MD discusses the work of the “Patient Perspectives” Taks force at the 7th World Symposium on Pulmonary Hypertension in a podcast for phaware Global Association 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 »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published

The EU Medical Device Regulation (MDR) and In Vitro Diagnostic Regulation (IVDR), introduced in 2017, aims to enhance patient safety, transparency, and information through stricter quality standards, performance evaluations, and oversight across the device lifecycle. But not all changes have been fully put into action, and many patients are still waiting to see benefits. To

Findings of European Patient Forum (EPF) survey on the implementation of EU legislation on medical devices now published Read Post »

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory

In an insightful discussion organised by Touch Respiratory, an E-Learning Provider , Prof. Jean-Luc Vachiery and Prof. Manreet Kanwar consider the state of the art in pulmonary arterial hypertension, including disease diagnosis, risk stratification, and key considerations for optimizing treatment and patient care in an evolving therapeutic landscape. Prof. Manreet Kanwar is Co-Director, Division of

Pulmonary arterial hypertension: A practical roadmap from diagnosis to treatment, Prof. Jean-Luc Vachiéry and Prof. Manreet Kanwar, Touch Respiratory Read Post »

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights”

The Pulmonary Hypertension Association in the U.S. has introduced a new podcast titled “PH Insights.” This podcast aims to elevate patient voices and foster in-depth discussions with healthcare professionals on various aspects of pulmonary hypertension. In the debut episode, “Filling in the Blanks: Understanding Pulmonary Hypertension, Part 1,” Jenny Yang, an assistant professor of medicine

The US Pulmonary Hypertension Association launches a new podcast series called “PH Insights” Read Post »

The US Food and Drug Administration (FDA) issues guidance to medical product sponsors to ensure greater inclusivity in clinical trials, June 26, 2024

The U.S. Food and Drug Administration (FDA) has issued a draft guidance titled “Diversity Action Plans to Improve Enrollment of Participants from Underrepresented Populations in Clinical Studies.” This guidance is aimed at assisting medical product sponsors in submitting “Diversity Action Plans” for certain clinical studies. These plans are designed to enhance the enrollment of historically

The US Food and Drug Administration (FDA) issues guidance to medical product sponsors to ensure greater inclusivity in clinical trials, June 26, 2024 Read Post »

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024

Dr. Joanna Pepke-Zaba, renowned consultant respiratory physician at Royal Papworth Hospital, recently received a prestigious European Respiratory Society (ERS) lifetime achievement award, marking another milestone in her illustrious career. In an interview with Saša Janković, recently published on March 18, 2024 on “Hospital Health Care Europe”, Dr. Pepke-Zaba discusses her dedication to advancing research and

Driving innovation and patient-centred care in pulmonary hypertension: the inspiring journey of Dr. Joanna Pepke-Zaba, March 28, 2024 Read Post »

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems 

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. 24 ERNs are working on a range of thematic issues, including ERN-Lung, the European Reference Center for Rare Lung Diseases, which

Kick-off meeting of the EU Joint Action JARDIN on the integration of European Reference Networks (ERNs) into national health systems  Read Post »

The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman

There is a lot of discussion and excitement at the present moment in the pulmonary hypertension community in the anticipation of the approval of sotatercept. The Pulmonary Hypertension Association UK has published some very insightful conversations with two leading specialists, Dr. Joe Newman, Clinical Research Fellow at the Royal Papworth Hospital, and Dr. Mark Toshner, Consultant

The Pulmonary Hypertension Association UK shares video interviews about sotatercept with experts at the Royal Papworth Hospital UK and the association’s Chairman Read Post »

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