Welcome to our April roundup of the most relevant and interesting content shared on this platform. April 2026 has been a particularly rich month, with significant news on the diagnostics, clinical trials and treatment front alongside important research on quality of life, patient preferences information, economic burden. There is also a selection of patient resources […]
Within the framework of the PHA 2026 International Conference (June 11-14 in Dallas, Texas), the Global Allergy & Airways Patient Platform (GAAPP) and Latin Health Leaders (LDL) will convene the “Global Pulmonary Hypertension Patient Hackathon“, taking place on June 10 (full day) and June 11 (half day), with the strategic support of the Pulmonary Vascular Research Institute (PVRI) and the Pulmonary Hypertension
The Canadian Pulmonary Hypertension Association (PHA Canada) has launched a “Pulmonary Hypertension Peer Mentor Program”, designed to connect patients and caregivers with trained volunteers. The peer mentors offer a supportive ear, share practical insights, and provide helpful resources based on their own lived experience with pulmonary hypertension. Read more on the PHA Canada website at
The UK Pulmonary Hypertension Association (PHA UK) is inviting everyone in the pulmonary community to enter their Poetry Competition — patients, caregivers, family members, friends, and healthcare professionals alike. It’s free to enter. These are some of the topics suggested: 👉 Visit the PHA UK website to enter.
This month, The Canadian Pulmonary Hypertension Association PHA Canada is raising awareness about the life-changing impact of organ and tissue donation. The newest issue of their magazine Connections is dedicated to Transplant & Pulmonary Hypertension, and it explores this important topic through stories, insights, and resources from the community. 👉 Subscribe to Connections and receive
Here is a short report: Walk4PH is a growing awareness initiative founded by Ayotunde Omitogun, a pulmonary hypertension patient and founder of the Cardiac Community, a Nigerian non-profit organisation dedicated to improving the lives of people living with heart and lung conditions. This year, Walk4PH has evolved into something larger than a single event. Built
Walk4PH Nigeria: A Community Steps Up for Pulmonary Hypertension Awareness, May 16, 2026 Read Post »
The Canadian Pulmonary Hypertension Association (PHA Canada) has recently announced the setting up of a “Patient Partner Advisory Council (PPAC)”—a new committee which brings together patients and caregivers to help shape the future of the pulmonary hypertension community. The founding members are Angèle Belliveau, Don Downey, Maureen Harper, Brooke Paulin, and Jane Sernoskie. Their lived experience
As US Pulmonary Hypertension Association, celebrates its 35th anniversary this year, founders Judy and Ed Simpson reflect on the organization’s history in the latest issue of Pathlight magazine. Check out the timeline at this link The Pulmonary Hypertension Association (PHA) was founded in 1991 by three patients and a nurse in Florida, and has grown
Czech cyclist Lukáš Jakovec is now on day 177 of his extraordinary solo bike journey around Europe, having covered an impressive 15,290 kilometres along the coastline — by the longest route possible. Lukáš is no ordinary cyclist. A multi-talented Czech professional — chef, tennis coach, tournament referee and professional bowler — he embarked on the
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,
DOWNLOAD THE SLIDES Lis Neubeck – Introduction to digital health Wendy Gin-Sing – Teleconsultations and remote follow-up in clinical practice Hall Skaara – home monitoring devices and wearables, a patient testimonial Ardeschir Ghofrani – Innovations in drug delivery to improve the patient experience DOWNLOAD THE FULL TRANSCRIPT HERE SHORT SUMMARY In this first quarterly webinar
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
