At the 66th Congress of the German Society for Pneumology in Munich, the €5,000 René Baumgart Foundation research prize was awarded to two outstanding researchers working in the field of pulmonary hypertension (full text in German available at this link) English AI translation and summary Dr. Fenja Knöpp (Justus Liebig University, Giessen) was recognised for […]
On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers,
A modified Delphi consensus was conducted by the Pulmonary Vascular Research Institute (PVRI) Lung Transplantation Workstream, involving 29 international experts on pulmonary arterial hypertension (PAH) and lung transplantation. The process generated consensus ( mean scores >_2.5 on Likert scale ) across 141 out of 223 statements relating to when to refer pulmonary arterial hypertension patients
In the Editor’s Note to “Mariposa” Hall Skaara, project manager at PHA Europe, highlights the organisation’s key 2024 achievements: Download the full issue of the magazine at this link on the PHA Europe website
A study published on March 18 2025 in Pulmonary Therapy provides a comprehensive view of pulmonary hypertension in Japan through a nationwide survey of 160 patients (119 with pulmonary arterial hypertension (PAH) and 41 with chronic thromboembolic pulmonary hypertension (CTEPH) and 211 physicians. We are particularly pleased to publish this article as one of the
The objective of the study published on February 19, 2025 as a Journal pre proof on Patient Edcuation and Counseling (§), is to develop a proposal to involve people living with rare and complex conditions in the development of clinical practice guidelines, based on a systematic review of qualitative literature (64 publications). The authors offer
Medication non-adherence in pulmonary arterial hypertension (PAH) can significantly impact patient outcomes, yet its prevalence and consequences remain understudied. This multi-center registry analysis examined self-reported non-adherence rates among pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension (CTEPH) patients, identifying key socioeconomic predictors and associated healthcare outcomes. Using data from the Pulmonary Hypertension Association Registry (PHAR),
The Dutch Pulmonary Hypertension Association, Stichting Pulmonale Hypertensie, has contributed financially with an amount of € 40.000 the RECOMPENSE – Right VEntricular COMPENsation with SotatercEpt – Phase 4 study conducted by the Amsterdam UMC. This research aims to investigate sotatercept’s effects on right ventricular function. Background Several large international studies have already been conducted in
The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!
Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »
The Alliance for Pulmonary Hypertension (AfPH) recently concluded its 14th webinar, marking the culmination of an educational initiative that began in June 2023. These virtual gatherings brought together internationally renowned experts in pulmonary hypertension, who shared their expertise on a comprehensive range of topics crucial to advancing patient care and quality of life. The diverse
Almost 4,000 patients and carers across 85 countries completed Phase 1 of the Pulmonary Hypertension Global Patient Survey (PH GPS). The survey was translated into 24 languages and launched in October 2023. The survey was written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary hypertension associations of Europe,
On Saturday, November 23, 2024, the Dutch National Pulmonary Hypertension Information Day brought together patients, caregivers, and medical professionals for an inspiring and informative symposium. This annual event, designed specifically for pulmonary hypertension patients and their loved ones, offered a full day of learning, connection, and support. The event was expertly chaired by Dr. Sanne
The Sociedad Latina de Hipertensión Pulmonar SLHP, the Colegio Médico del Perú Región Lima and the pulmonary hypertension patient association “Llapan Kallpa”, are inviting to the ,The International Symposium on Pulmonary Hypertension and the 9th meeting of Latin American leaders being held on 6-7 December, with the participation of esteemed professionals including Dr. Pilar Escribano,
The videos of the presentations and recorded sessions from the PHA Europe Annual Pulmonary Hypertension European Conference (APHEC) 2024, held in Castelldefels, Barcelona, Spain, are now available on the Bel Air Center platform. 1. Prof. Ardeschir Ghofrani: Current and future pulmonary hypertension treatments 2. Prof. Polona Mlakar: Chronic thromboembolic pulmonary hypertension (CTEPH) 3. Prof. Mona
Early diagnosis can save lives. To improve care for those living with pulmonary hypertension, the US pulmonary hypertension association, the PHA, and the American Lung Association have developed a “Guidance to the Guidelines,” a tool to help health care providers recognize pulmonary hypertension symptoms sooner and refer patients to specialists. This resource aims to reduce
Quote from Louise’s article for the Dutch PH Association From November 6 to 10, 2024, it was time to the Annual General Meeting and Conference of PHA Europe. More than 70 delegates from 42 national organizations representing 37 countries participated. The Netherlands was represented by Korrie de Koning and Louise Bouman, secretary and chair of
The Pulmonary Vascular Research Institute (PVRI) organised a patient-directed webinar on “Debunking Myths of Lung Transplantation” on September 25, 2024. This was an outstanding webinar: the explanations were exceptionally clear and delivered in easy-to-understand language, covering every step of the transplant journey—from getting listed and preparing for surgery, through the operation and immediate post-op, to
This webinar explores the importance of mental health in pulmonary hypertension management, featuring experts who will discuss the role of mental health professionals, coping strategies, and ways to improve the overall well-being of PH patients.
Webinar: Mental health in pulmonary arterial hypertension Read Post »
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
The webinar was hosted by the Alliance for Pulmonary Hypertension on Tuesday, September 17, 2024.
Navigating clinical trials in pulmonary hypertension webinar Read Post »
