Starting from March 2026, our monthly highlights will be available not only on LinkedIn but also directly on the this platform – making it easier for our global community to stay up to date with the latest in pulmonary hypertension research, clinical developments and patient resources. The other advantage is that this page can be […]
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,
The aim of this publication is to guide patients through the process of notifying the Driver and Vehicle Licensing Agency of your pulmonary hypertension, answer some of the common questions we hear, and help you understand what to expect along the way. Read more at this link on the PHA UK website
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,
Here is the AI translation of the index. Patient Community & Events Regional Association Updates (Landesverbände) Reports from local pulmonay hypertension chapters across Germany, covering Baden-Württemberg, Bavaria, Berlin/Brandenburg/Mecklenburg-Vorpommern, Hamburg/Schleswig-Holstein, Hesse, North Rhine-Westphalia, Saxony, and Saarland/Rhineland-Palatinate (pp. 16–33), plus a directory of regional leaders (p. 33). Medical & Scientific Topics Practical Patient Information Policy & Advocacy
Developed by psychologists, and supported by the UK’s pulmonary hyeprtension association, PHA UK, this four-week programme consists of a series of workbooks based on Cognitive Behavioural Therapy (CBT), to help patients change their thinking habits and behaviours. Find our more at this link on the PHA UK website
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
“Ask a PH Doc” is a new program designed by the Canadian pulmonary hypertension association PHA Canada to connect the pulmonary hypertension community with Canadian specialists. One can submit general questions about diagnosis, medications, lifestyle, mental health, caregiving, and navigating the healthcare system in Canada. Every question receives a response, either directly by email, or
Lisa Harder is PHA Canada’s newest Knowledge Philanthropist. These are specialized volunteers help the organization fulfill its mission. Each Knowledge Philanthropist serves the pulmonary hypertension community in their own way. Depending on their professional background, they develop resources, content from current research projects, help raise awareness, and more! Lisa brings a unique perspective as both
The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website
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
The Pulmonary Hypertension Association of Canada, PHA Canada, has published an article reporting on the findings of a survey where they asked a small group of patients what they valued about having a right heart catheterization (RHC), and how they would like their care providers to share the information. The article is not open access
As 2025 comes to a close, we reflect with gratitude on a year of remarkable growth and impact Our Pulmonary Hypertension Knowledge Sharing Platform, the digital hub hosting the Alliance for Pulmonary Hypertension’s activities, expanded significantly over the year, recording over 9.5k views from 4.5k visitors across 106 countries—representing significant growth compared to 2024. We
On October 11, 2025, the Alliance for Pulmonary Hypertension launched the inspiring “Wheels of Hope” campaign, following Czech cyclist and chef Lukáš Jakovec as he embarked on an extraordinary journey across Europe to raise awareness about organ donation and transplantation—all while cycling through some of Europe’s most challenging terrain. Key Numbers Route Highlights Starting from
The Alliance for Pulmonary Hypertension’s quarterly webinars aim to keep the community informed and connected by examining recent advancements, emerging research, and new initiatives in pulmonary hypertension. Through a blend of expert (scientific and patient) presentations and open dialogue, these sessions encourage active participation and create space for diverse perspectives from patients, caregivers, and healthcare
The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep
“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,
The two main highlights of this edition are the report of the UK Pulmonary Hypertension survey on what symptoms affect patients most (pages 9-12) and the association’s 25th anniversary celebrations in Birmingham (pages 16-18). For the survey there were 232 responses from patients and 35 responses from caregivers. KEY FINDINGS – THE PATIENT VIEW MOST
