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’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants

The Alliance for Pulmonary Hypertension’s quarterly webinars aim to keep the community informed and connected by examining recent advancements, emerging research, and new initiatives in pulmonary hypertension. Through a blend of expert (scientific and patient) presentations and open dialogue, these sessions encourage active participation and create space for diverse perspectives from patients, caregivers, and healthcare

The Alliance for Pulmonary Hypertension’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants 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 »

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 »

Integrating Sotatercept Into Pulmonary Arterial Hypertension (PAH) Care: Vallerie McLaughlin, MD, American Heart Association, November 9, 2025

Vallerie McLaughlin, MD, the Kim A. Eagle M.D. Endowed Professor of Cardiovascular Medicine and Professor of Internal Medicine at the University of Michigan Medical School, presented the results of a pooled analysis of the PULSAR, STELLAR, and ZENITH trials of sotatercept in pulmonary arterial hypertension at the 2025 American Heart Association Scientific Sessions, held in

Integrating Sotatercept Into Pulmonary Arterial Hypertension (PAH) Care: Vallerie McLaughlin, MD, American Heart Association, November 9, 2025 Read Post »

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”.

phaware® global association announces the launch of an impactful new special edition series of our acclaimed podcast, “I’m Aware That I’m Rare,“ shining a spotlight on the urgent and growing crisis of methamphetamine-associated pulmonary hypertension (Meth-PAH). The six-episode series, premiering September 16 and running through October 21, kicks off our 10th season and leads up to November’s Pulmonary Hypertension Awareness Month with

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”. 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 »

Roham Zamanian, MD, FCCP discusses the concept of “disease modification” in the treatment of pulmonary hypertension in a PHAWARE global association podcast

Dr. Roham Zamanian MD, FCCP, discusses the concept of “disease modification” in the treatment of pulmonary hypertension. He describes how this idea emerged from discussions with colleagues about the future of pulmonary hypertension therapies, and the potential for treatments to impact the underlying disease process beyond just reducing pulmonary artery pressures. Listen to the podcase

Roham Zamanian, MD, FCCP discusses the concept of “disease modification” in the treatment of pulmonary hypertension in a PHAWARE global association podcast 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 »

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 »

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families

This week (12th-18th May) is Mental Health Awareness Week in the UK. Over the years the UK pulmonary hypertension association, PHA UK, has built up a range of services and resources to help patients that are struggling with anxiety, depression, or general mental wellbeing, you can find all the details at here.

Mental Health Awareness Week in the UK (12-18 May): Discover Support Resources from the UK Pulmonary Hypertension Association for Patients and Families 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 »

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 »

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 »

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025”

Looking back on the year 2024, PHAWARE’s founder Steve Van Wormer reflects on an extraordinary year of milestones that exemplify the association’s dedication to raising awareness and fostering innovation for the pulmonary hypertension community. Among the notable achievements: the successful launch of a groundbreaking new app, the remarkable milestone of 500 episodes of the inspiring

The phaware global association celebrates 500 podcasts and being voted #1 of the “10 Best Pulmonary Hypertension Podcasts You Must Follow in 2025” 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 »

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants!

The Alliance for Pulmonary Hypertension (AfPH) recently concluded its 14th webinar, marking the culmination of an educational initiative that began in June 2023. These virtual gatherings brought together internationally renowned experts in pulmonary hypertension, who shared their expertise on a comprehensive range of topics crucial to advancing patient care and quality of life. The diverse

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants! Read Post »

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