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 […]
Download the slides Co-design of digital interventions Teleconsultations and remote follow-up in clinical practice Home monitoring devices and wearables Innovations in drug delivery to improve the patient experience In this first quarterly webinar we were joined by leading experts and a patient advocate to explore how AI, digital health, remote monitoring, and new treatment approaches
SCOTLAND: It was announced last week (9th February) that sotatercept, the ‘first in class’ pulmonary arterial hypertension treatment, will not be commissioned for use by NHS Scotland at this stage. Our fellow patient advocates at the PHA UK note that whilst this is disappointing news initial refusal is common for new and specialised drugs, and
In honour of Rare Disease Day we’re excited to unveil the Pulmonary Hypertension Expert Patient Academy (PHEPA) a groundbreaking collaboration between Alliance for Pulmonary Hypertension and PHA Europe, officially endorsed by the European Reference Network for Rare Respiratory Diseases (ERN-LUNG), on February 27th. Download the slides This webinar showcased how this innovative program, whose main
A poster presented by the French Pulmonary Hypertension association HTaPFrance was displayed at the RARE 2025 Congress on October 8, 2025– see photo below with HTaPFrance President Maggy Surace. The poster presents data from a questionnaire that was sent to patients’ families and to the patients. It summarizes the section “Understanding the disease at the
Every year, the National Audit of Pulmonary Hypertension (NAPH) measures the quality of care provided to pulmonary hypertension patients in the United Kingdom by asking specialist centres to provide data that is then compared against a set of 15 agreed standards. The latest audit, covering 2023-24, shows that high levels of care continue – despite centres seeing
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 new pulmonary arterial hypertension treatment sotatercept was approved for use in the UK by the Medicines and Healthcare products Regulatory Agency (MHRA) at the end of December 2024 – but that doesn’t mean it can now be prescribed. In this short video, the Chair of the UK Pulmonary Hypertension Association Dr Iain Armstrong explains
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
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 webinar was hosted by the Alliance for Pulmonary Hypertension on Tuesday, September 17, 2024.
Navigating clinical trials in pulmonary hypertension webinar Read Post »
The European Society of Cardiology’s Congress is the foremost gathering in the field of cardiology worldwide. This year’s edition took place in London from 30.8-1.9, 2024, and counted 31,700 participants from 162 countries, including 5,400 faculty and presenters, representatives of the National Cardiac Societies and industry partners. Pisana Ferrari, the Alliance for Pulmonary Hypertension’s Secretary
The 5th French Pulmonary Hypertension Network Meeting, convened in Le Kremlin-Bicêtre, France, in 2023, served as a platform to examine current evidence and outstanding questions in pulmonary hypertension, particularly in the context of the recently published 2022 ESC/ERS Guidelines. The French Network is composed of some of France’s key experts in the field of pulmonary
Colleen Brunetti, Past Chair of the Board of the Pulmonary Hypertension Association, speaks about her experience with the condition and taking part in clinical trials in this video, published on the European Lung Foundation YouTube channel. Read more about Colleen and her book “Defining the new normal: A guide to becoming more than your diagnosis”
The full transcripts of the Alliance for Pulmonary Hypertension’s 2023 six webinars are now available! The transcripts encapsulate invaluable insights that continue to resonate with current trends and emerging issues, serving as a vital resource for our community. They are now in a format that can be translated into 40 languages, thanks to the embedded
The Holland Hybrid Heart (HHH) consortium brings together universities, higher professional education, companies and patient organisations. The Dutch pulmonary hypertension association Stichting Pulmonale Hypertensie is part of this consortium. The consortium has been awarded a grant of 11 million euros from the National Science Agenda for its research on a soft implantable robotic heart for
A this PHA live webinar speakers Sandeep Sahay, and Vallerie V. McLaughlin discussed hopeful discoveries from late-stage clinical trials and the differences between current symptom management practices and new disease-modifying therapeutics. The webinar will be moderated by PHA’s Elizabeth Joseloff. This webinar covered the following topics: • The differences between the current symptom management practices
Join the Pulmonary Hypertension Association, PHA, for the upcoming “Discovering New Pulmonary Hypertension Therapies on the Horizon” PHA Live webinar on Wednesday, Feb. 21 at 2 pm. EST/ 7 p.m. UTC. During the webinar, Sandeep Sahay, MD, MSc, ATSF, will review: Don’t miss this opportunity to gain insights into these promising therapies that will help manage your
The Team PHenomenal Hope Award Program rewards studies of novel concepts in pulmonary hypertension with a potential to transform the field. The award is not limited to any pulmonary hypertension groups, pediatrics, or adult studies. Eventual clinical applicability is expected. As such, this program will provide an opportunity for individuals to affect the quality of
