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 »

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

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New edition of emPHasis, the UK Pulmonary Hypertension Association (PHA UK)’s magazine is just out

The two main highlights of this edition are the report of the UK Pulmonary Hypertension survey on what symptoms affect patients most (pages 9-12) and the association’s 25th anniversary celebrations in Birmingham (pages 16-18). For the survey there were 232 responses from patients and 35 responses from caregivers. KEY FINDINGS – THE PATIENT VIEW MOST

New edition of emPHasis, the UK Pulmonary Hypertension Association (PHA UK)’s magazine is just out Read Post »

RARE 2025 Congress, October 8, 2025: Presenting research by the French Pulmonary Hypertension Association HTaPFrance on explaining the condition to children

A poster presented by the French Pulmonary Hypertension association HTaPFrance was displayed at the RARE 2025 Congress on October 8, 2025– see photo below with HTaPFrance President Maggy Surace. The poster presents data from a questionnaire that was sent to patients’ families and to the patients. It summarizes the section “Understanding the disease at the

RARE 2025 Congress, October 8, 2025: Presenting research by the French Pulmonary Hypertension Association HTaPFrance on explaining the condition to children Read Post »

Free publication of the month on “Menopause and Pulmonary Hypertension”, by the UK Pulmonary Hypertension Association PHA UK

Menopause affects all women in the pulmonary hypertension community at some stage of their life. A free publication by the Pulmonary Hypertension Association UK answers common questions, shares real experiences, and brings expert advice to support women who are going through the process. Order it here

Free publication of the month on “Menopause and Pulmonary Hypertension”, by the UK Pulmonary Hypertension Association PHA UK Read Post »

Mark the date for the National Pulmonary Hypertension Information Day in the Netherlands, November 22, 2025!

🫁 National Pulmonary Hypertension Information Day Date: 22 November 2025 | Time: 10:15 – 16:00Location: Congrescentrum De Schakel, Oranjelaan 10, 3862 CX Nijkerk 📍 Venue: Congrescentrum De Schakel, Nijkerk🎈 Theme: “Stronger Together”🎤 Chair: Arieke van Liere An inspiring day full of information, recognition, and connection—especially for people living with pulmonary hypertension, their loved ones, and

Mark the date for the National Pulmonary Hypertension Information Day in the Netherlands, November 22, 2025! Read Post »

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained!

On October 11, the European Directorate for the Quality of Medicines & HealthCare (EDQM), Council of Europe European Donation Day, the Alliance for Pulmonary Hypertension launched a campaign to to honour donors and their families, to celebrate life after transplant, and to call for greater awareness of the urgent need for organ donation. The six

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained! 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 »

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 »

“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 »

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 »

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out

The German pulmonary hypertension association ph e.v. has published the August edition of its magazine “Rundbrief”, very rich in content as always. Key topics covered include: Research and Medical Advances: Clinical Practice: Professional Development: PDF In German available here

August 2025 edition of “Rundbrief”, the official magazine of the German pulmonary hypertension association ph e.v., is now out Read Post »

“Breath Beyond Borders” Challenge, Pulmonary Vascular Research Institute (PVRI) – November 2025 PH Awareness Month

Members and supporters of the Pulmonary Vascular Research Institute (PVRI) are taking on a global challenge to raise awareness for pulmonary hypertension (PH). So far, 24 participants have pledged a combined 3,901 km (2,438 miles) — enough to travel from Athens to Dublin, crossing 12 countries! Why Dublin? The virtual “arrival” in Dublin is particularly

“Breath Beyond Borders” Challenge, Pulmonary Vascular Research Institute (PVRI) – November 2025 PH Awareness Month 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 »

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK

Menopause affects many women in the pulmonary hypertension community. This new publication by the UK Pulmonary Hypertension Association, PHA UK, answers common questions, shares real experiences, and brings expert advice to help make things a little easier for patients. Order this free resource on the PHA UK website at this link

Menopause and pulmonary hypertension, a new publication by the UK Pulmonary Hypertension Association, PHA UK Read Post »

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025

A study published in Pulmonary Circulation on June 17, 2025 has examined the relationships between fatigue, pain, anxiety, depression, and quality of life in 68 adults with pulmonary hypertension, recruited from global pulmonary hypertensions associations, who completed a series of self-report measures. The researchers found alarmingly high rates of these symptoms: 86.8% experienced clinical levels

The Role of Psychological Distress on Health-Related Quality of Life, Fatigue, and Pain in Adults With Pulmonary Hypertension, Pulmonary Circulation, June 17, 2025 Read Post »

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