Five new PEP Talks now online in the dedicated section of this website

Have you watched our latest PEP Talks? In the five most recent videos: 🔹 Aygün Mengelli Tomur (Turkey) reflects on life after lung transplantation, gratitude to her donor, and the importance of organ donation. 🔹 Jolie Lizana (USA) draws on her experience as a person living with pulmonary arterial hypertension, her healthcare background, and her […]

Five new PEP Talks now online in the dedicated section of this website Read Post »

Announcing five new “PEP Talks, part of our ongoing “Patient Empowering Patients” educational video series, September 28, 2026

We are thrilled to release five brand-new “Patients Empowering Patients” talks — five women, three countries (Italy, Turkey, the US), and five very different stories, all united by the same resilience and positive outlook that defines this community. From Aygün Mengelli Tomur’s lung transplant journey “From Waiting to Breathing: A New Beginning,” to Deger Kesimogluğlu’s

Announcing five new “PEP Talks, part of our ongoing “Patient Empowering Patients” educational video series, September 28, 2026 Read Post »

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024

During a hospital stay described in her December 4, 2024 article for Pulmonary Hypertension News, Jen Cueva, a pulmonary hypertension patient, discovered potentially dangerous errors in her medication records. Her experience, detailed in “Organizing health information is crucial to rare disease management,” demonstrates why maintaining accurate, up-to-date medication lists is essential for patient safety, particularly

Organizing health information is crucial to rare disease management, Jen Cueva, Pulmonary Hypertension News, December 4, 2024 Read Post »

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!

Micheal Garrett is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes! Read Post »

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023

The Pulmonary Hypertension Association (PHA) has just share its latest series of informational videos on treating and managing pulmonary hypertension, featuring J. Wesley McConnell, M.D., director of the Norton Healthcare Pulmonary Hypertension Clinic in Louisville, Kentucky. In this seven-part video series, Dr. McConnell provides an overview of managing a PH diagnosis and the various treatment

Seven-part informational video series on treating and managing pulmonary hypertension published by the Pulmonary Hypertension Association (PHA), July 27, 2023 Read Post »

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump!

IFinding a way for pulmonary hypertension to carry their pump for IV medication in a way that works for them is important. The PHA UK invites patients who have found the “perfect bag”, or maybe even a home made one, to send a photo so they can share it to inspire others. Reply to media@phauk.org

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump! Read Post »

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