“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 »

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025

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

Transplants are still too difficult to schedule for pulmonary hypertension patients, Anna Lisabeth Jeter, Pulmonary Hypertension News, August 28, 2025 Read Post »

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024

The full proceedings of the World Symposium on Pulmonary Hypertension which was held in Barcelona 29.6-1.7, 2024, have now been published in the European Respiratory Journal at this link. The proceedings cover the work of the 15 task forces; Task Force n°1’s article is titled “Exploring the patient perspective in pulmonary hypertension” (see below for

Key insights from the “Patient Perspective” article in the World Symposium on Pulmonary Hypertension (WSPH) proceedings, European Respiratory Journal, August 29, 2024 Read Post »

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up!

The Alliance for Pulmonary Hypertension has been a proud member of the European Lung Foundation (ELF) Patient Organisation Network since May 2023 (see our article at this link). More recently, the European Lung Foundation has set up a new Patient Advisory Group dedicated specifically to pulmonary hypertension. The ELF’s Patient Advisory Groups, also known as

New European Lung Foundation (ELF) “Pulmonary Hypertension Patient Advisory Group”, PAG, set up! Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” Read Post »

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022

PHA Europe organized an event in the EU Parliament on April 26, 2022 for the launch of its “Call to Action on the unmet needs of patients with pulmonary hypertension”. The event was hosted by MEP Istvan Ujhelyi (Hungary) and chaired by Prof. Marc Humbert (ERS President). The Call to Action is a revisit of

PHA Europe “Call to Action on the unmet needs of patients with pulmonary hypertension” launch event in the European Parliament, April 2022 Read Post »

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work

The European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex on rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26

What are the European Reference Networks (ERNs) and why it is important that the pulmonary hypertension community participate in its work Read Post »

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