Patients, caregivers and advocates across the US are calling for passage of the SOAR Act (Supplemental Oxygen Access Reform Act), a bipartisan bill aimed at improving access to supplemental oxygen for over 1.5 million Americans with serious lung and heart conditions — including portable, high-flow liquid oxygen, which is often unreliable, delayed, or simply unavailable under current […]
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
At the Alliance for Pulmonary Hypertension we are very proud that Louise Bouman, Member of our Board, has been elected as Chair of the UPAG (United Patient Advisory Group) of the European Lung Foundation, United Patient Advisory Group within the European Lung Foundation (ELF), a collaborative network consisting of representatives from various condition-specific Patient Advisory
Within the framework of the PHA 2026 International Conference (June 11-14 in Dallas, Texas), the Global Allergy & Airways Patient Platform (GAAPP) and Latin Health Leaders (LDL) will convene the “Global Pulmonary Hypertension Patient Hackathon“, taking place on June 10 (full day) and June 11 (half day), with the strategic support of the Pulmonary Vascular Research Institute (PVRI) and the Pulmonary Hypertension
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
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,
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
Jan Geissler is the Founder and CEO of Patvocates, a consultancy and think tank on patient advocacy and patient engagement based in Riemerling, Germany. In an article he co-authored for the Springer Nature journal “The Patient” Geissler and his colleagues argue that meaningful patient involvement in healthcare research and publishing can bridge significant gaps between
Steven Gijssels is Chair of the Patient Expert Center in Belgium. He has recently published a review of the book “The Patient Priority” by Stefan Larsson, Jennifer Clawson and Joshua Kellar, three Boston Consulting Group consultants. The book calls for integrated care, more efficient reimbursement models, and outcome-focused evaluations of healthcare interventions. Tracking patient outcomes
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 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:
Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association, was recently invited to share her experience as a EUPATI Nederland fellow. Pulmonary Hypertension: Rare and Complex In pulmonary hypertension, blood pressure in the lung vessels is too high due to narrowing of the pulmonary arteries. This overloads the right heart chamber, making it increasingly difficult
The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof
World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is
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
Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,
What does it feel like to carry out normal every day activities like ironing a shirt or sweeping the floor when you have pulmonary hypertension? The Asociación Nacional de Hipertensión Pulmonar ANHP will set up a booth on May 6, at the Hospital Universitario Puerta De Hierro Majadahonda, from 9:00 a.m. to 2:00 p.m., where visitors will be
In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount. Recognizing this need the
This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and
