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,
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
LINK TO VIDEO TRANSCRIPT Can be translated in 40 languges, check orange button on bottom of page Gergely Meszaros: Good evening and good afternoon to everyone. Welcome to this webinar introducing the Pulmonary Hypertension Expert Patient Academy (PHEPA). I’m delighted to present this new initiative. When ERN-LUNG, the European Reference Network for Rare Respiratory Diseases,
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
Not to be missed! This live webinar organised by the European Society for Organ Transplant aims to provide an update on the burden of Chronic Lung Allograft Dysfunction (CLAD), emphasizing the patient’s perspective and most important challenges living with CLAD. The webinar will cover respiratory rehabilitation and palliative care measures, including the non-pharmacological and symptomatic
Louise Bouman attended the Pulmonary Vascular Research Institute conference in Dublin on behalf of the Alliance for Pulmonary Hypertension, of which she is a Board Member. You can find her key highlights summary at this link and the full report below. Louise also attended a “Women in Pulmonary Hypertension” lunch, which you can read about
The Lung Transplant Foundation has assembled a panel of long-term lung transplant survivors (20+ years) who share what life has been like in the decades following their successful lung transplant. This panel is a celebration of all that is possible when we say “yes” to lung transplant. 🗓️ Mark the date: January 16, 2026🕰️ 7
Join Dr. Nathan Hambly, a respirologist at the Firestone Institute for Respiratory Health at St. Joseph’s Healthcare, Hamilton, Canada, as he explores why pulmonary arterial hypertension happens in scleroderma, how to spot the signs early, and what care options exist today. 🗓️ January 13 | 🕐 1:30 pm EST | 💻 Online🎙️ Hosted in partnership
The Pulmonary Vascular Research Institute (PVRI) Congress 2026 will take place in the historic city of Dublin from 28 January – 1 February 2026. ➡️ Explore the full Congress programme at this link The first and last day (28 January and 1 February) will be satellite meetings with the main plenary sessions happening 29-31 January.
The 6th “Journées du Réseau Français de l’Hypertension Pulmonaire” (JRF-HTP), held in October 2024, provided a review of the evolving landscape in pulmonary hypertension (PH). The meeting brought together clinicians and researchers to exchange on the most recent scientific, clinical, and organizational advances in pulmonary hypertension. We are proud that a patient advocate was included as co-author,
Vallerie McLaughlin, MD, the Kim A. Eagle M.D. Endowed Professor of Cardiovascular Medicine and Professor of Internal Medicine at the University of Michigan Medical School, presented the results of a pooled analysis of the PULSAR, STELLAR, and ZENITH trials of sotatercept in pulmonary arterial hypertension at the 2025 American Heart Association Scientific Sessions, held in
🫁 National Pulmonary Hypertension Information Day Date: 22 November 2025 | Time: 10:15 – 16:00Location: Congrescentrum De Schakel, Oranjelaan 10, 3862 CX Nijkerk 📍 Venue: Congrescentrum De Schakel, Nijkerk🎈 Theme: “Stronger Together”🎤 Chair: Arieke van Liere An inspiring day full of information, recognition, and connection—especially for people living with pulmonary hypertension, their loved ones, and
On Monday, 28 September 2025, a State of the Art Session was held at the European Respiratory Society (ERS) Annual Congress 2025 titled: “Pulmonary Hypertension associated with lung diseases: the most burning questions.” The session was chaired by Prof. Dr. Olivier Sitbon, Prof. Dr. David Montani, and Dr. Nesrin Ocal. Leading experts shared the latest
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
phaware® global association announces the launch of an impactful new special edition series of our acclaimed podcast, “I’m Aware That I’m Rare,“ shining a spotlight on the urgent and growing crisis of methamphetamine-associated pulmonary hypertension (Meth-PAH). The six-episode series, premiering September 16 and running through October 21, kicks off our 10th season and leads up to November’s Pulmonary Hypertension Awareness Month with
Pisana Ferrari, Secretary General of the Alliance for Pulmonary Hypertension and President of the Italian Pulmonary Hypertension Association AIPI, was invited to deliver the opening presentation on patient perspectives and empowerment at the “World Symposium on Pulmonary Hypertension Updates” conference in Bologna on July 3-5, 2025. Unfortunately, due to health issues, she had to withdraw
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
An article titled “The Genesis and Legacy of the NHLBI Patient Registry for the Characterization of Primary Pulmonary Hypertension”, published recently in Pulmonary Circulation, traces the historical development of primary pulmonary hypertension (PPH) research from its first pathological description by Ernest Romberg in 1891 through the establishment of the landmark US National Heart, Lung, and
On Wednesday October 1, 2025, a special programme at the European Respiratory Congress will be discussing what can ERN-LUNG offer for the future. ERN-LUNG is a patient-centric network of European healthcare providers and patient organisations, committed Europe-wide and globally to reducing morbidity and mortality from rare lung diseases in people of all ages through: ✅
