Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025
A new study presented at the American Thoracic Society 2025 Conference reveals that women with pulmonary arterial hypertension (PAH) rely heavily on family caregivers but face significant gaps in meeting their support needs. Methodology Researchers conducted a 45-minute web-based quantitative survey across multiple countries, targeting women aged 21-50 with pulmonary arterial hypertension. Patient-reported outcome measures
Recording of May 15, 2025 European Patients’ Forum webinar on understanding patients’ rights in the European Health Data Space (EHDS) now available
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:
Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials, a systematic review and metanalysis, European Respiratory Review, May 14, 2025
Health-related quality of life (HRQoL ) is an important outcome measure in pulmonary arterial hypertension research, but an evaluation of which patient questionnaires work best had not been done up to now. Also, different studies use different questionnaires, making it hard to compare results. A systematic review (PROSPERO ID: CRD42024484021) was conducted following Preferred Reporting
The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe
Introduction The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation
Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025
Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease, In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement. Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having
“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5
Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World
Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development
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 European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”
The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight
Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks
The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here
Effective Communication Key to Improving Medication Adherence in Pulmonary Arterial Hypertension, findings of the PERSIST Study, Pulmonary Circulation
A recent study published in Pulmonary Circulation highlights the vital role of proactive communication in improving medication persistence among individuals with pulmonary arterial hypertension. The study, titled PERSIST (Practices affEcting macitentan and selexipag patient persistence Rates utilizing pulmonary arterial hypertension clinical Site and patIent perSpecTives), surveyed 134 patients and 23 healthcare professionals across the United
Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024
This systematic review, published on the Respiratory Medicine November-December 2024 issue, focuses on identifying and evaluating quality of life (QoL) measurement instruments specifically designed for patients with pulmonary arterial hypertension (PAH): EmPHasis-10, CAMPHOR, PAH SYMPACT, and LPHQ. Using the 2018 COSMIN guidelines, the researchers searched multiple medical databases to assess these instruments’ psychometric properties. While
The Health Policy Partnership teams up with a multidisciplinary group of international experts to develop a policy toolkit for pulmonary arterial hypertension
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
The Rise of the “Expert” Patient: Opportunities and Challenges in Democratizing Drug Development
For many years, drug development has lagged behind healthcare in engaging patients. Recently, however, the field has shifted toward more active patient involvement, recognizing the value of patient insights both for democratizing drug creation and enhancing innovation. A recent article published in “Science is Culture” analyzes the potential and challenges of involving patients in drug
The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public
The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular
Video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on PH”, September 2, 2024 now available
The video recording of the European Respiratory Society (ERS) Vision Live panel discussion titled “Review of the World Symposium on Pulmonary Hypertension”, which took place on 2 September, 2024, in now available online on the ERS Respiratory Channel at this link Expert panellists Marc Humbert, Anton Vonk Noordegraaf, Ulrich Silvia, Isabel BLANCO VICH and Louise Bouman
Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal
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
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
For far too long, medicine has ignored the valuable insights that patients have into their own diseases. It is time to listen, “Aeon Psyche”, August 5, 2024
An article titled “Empowering patient research” which was recently published on the Aeon Psyche newsletter on August 5, 2024, discusses the challenges faced by patients with chronic illnesses and disabilities in the healthcare system, particularly in research and academia. The article advocates for the inclusion of patients as active participants in medical research, arguing that
Award-winning singer, songwriter and speaker Chloe Temtchine, who is a former pulmonary hypertension patient and double lung transplant recipient, releases a new song dedicated to her donor
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,