Natalia Maeva, a patient advocate for pulmonary hypertension, attended the European Respiratory Society (ERS) Presidential Summit in Warsaw in June 2026, participating in sessions on early detection, air quality, tobacco control, climate change and lung health. Having had her own life transformed by access to specialised treatment and lung transplantation, she found the discussions on […]
The Rino Aldrighetti Leadership Award is the highest honor presented by the Pulmonary Hypertension Association (PHA). The award honors people who have shown outstanding leadership, commitment, and worldwide influence in raising PH awareness, supporting patients, and pushing forward treatment options. Omitogun was diagnosed with pulmonary hypertension in 2013 after a congenital heart defect, and over
A 51-year-old lung transplant recipient — transplanted in 2002 for cystic fibrosis — successfully reached the summit of Mount Aconcagua in Argentina (6,961 m) in January 2026, without supplemental oxygen. This is the highest altitude ever recorded for a lung transplant recipient. The achievement was part of an international medical expedition organised by the Vienna
On 5 May, World Pulmonary Arterial Hypertension Day, a beautiful and unusual initiative brought the stories of people living with this rare condition to life in an unexpected way — through music. “Aria di vita” (“Breath of Life”) is a campaign promoted by MSD Italia, with the patronage of the two Italian pulmonary hypertension patient
LINK TO VIDEO TRANSCRIPT Can be translated in 40 languges, check orange button on bottom of page Gergely Meszaros: Good evening and good afternoon to everyone. Welcome to this webinar introducing the Pulmonary Hypertension Expert Patient Academy (PHEPA). I’m delighted to present this new initiative. When ERN-LUNG, the European Reference Network for Rare Respiratory Diseases,
A powerful piece by patient advocate Jolie Lizana recently published on Pulmonary Hypertension News tackles a crucial but often overlooked challenge: how to explain pulmonary hypertension to others when it’s such a complex, invisible disease. Writing from her own 12-year journey living with pulmonary hypertension and heart failure, Lizana realized that even within the pulmonary
The Lung Transplant Foundation has assembled a panel of long-term lung transplant survivors (20+ years) who share what life has been like in the decades following their successful lung transplant. This panel is a celebration of all that is possible when we say “yes” to lung transplant. 🗓️ Mark the date: January 16, 2026🕰️ 7
The Pulmonary Hypertension Global Patient Survey (PH GPS), the largest survey of its kind in the pulmonary hypertension field, was collaboratively designed through a multidisciplinary consensus process and disseminated by pulmonary hypertension organizations globally. The survey analyzed data from 3,329 adult patients (mean age 52.2 years, 81.7% female) and 135 paediatric patients, examining healthcare provision,
The Pulmonary Hypertension Association of Canada, PHA Canada, has published an article reporting on the findings of a survey where they asked a small group of patients what they valued about having a right heart catheterization (RHC), and how they would like their care providers to share the information. The article is not open access
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 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
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
“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,
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
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
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 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
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
On BBC News on 22 August 2025, Emma Stanley tells the incredible story of Catherine Makin, a double lung transplant patient. Catherine Makin, 42, a National Health Service (NHS) clerical worker from Great Harwood, Lancashire, has won 10 medals in swimming and table tennis at the British Transplant Games after receiving a double lung transplant
Award-winning singer-songwriter Chloe Temtchine has released a new single “Heaven in the Darkest Place” featuring rapper Freeway. The song is inspired by Temtchine’s own near-death experience and life-saving double-lung transplant. Key collaborator: Freeway brings personal significance to the track – he received a kidney transplant in 2019. Broader purpose: The song serves as the official
