Join the European Pulmonary Fibrosis Federation (EU-PFF) and the Alliance for Pulmonary Hypertension for a webinar on pulmonary hypertension associated with interstitial lung disease (PH-ILD) on October 21, 2026, at 18:00.

On 21 October at 18:00 CET, join the European Pulmonary Fibrosis Federation (EU-PFF) and the Alliance for Pulmonary Hypertension for a webinar titled “Together for PH-ILD: Strengthening Awareness, Care, and Patient Support”. The webinar will bring together clinicians and patient advocates to discuss how cross-collaboration can improve awareness, care and support for people living with […]

Join the European Pulmonary Fibrosis Federation (EU-PFF) and the Alliance for Pulmonary Hypertension for a webinar on pulmonary hypertension associated with interstitial lung disease (PH-ILD) on October 21, 2026, at 18:00. Read Post »

The Pulmonary Vascular Research Institute (PVRI) publishes a 13-part series to help people living with pulmonary hypertension (PH), their families, and carers understand clinical trials,

This series was created by the IDDI Patient Engagement and Empowerment Workstream, of the Pulmonary Vascular Research Institute (PVRI), whose members are Hall Skaara, Louise Bouman, Jamie Myrah, Colleen Brunetti, Luke Howard, Gil Golden, Vera Toth-Fejel, Wendy Gin-Sing. The series explains what clinical trials are, how they work, and what it means to take part. All

The Pulmonary Vascular Research Institute (PVRI) publishes a 13-part series to help people living with pulmonary hypertension (PH), their families, and carers understand clinical trials, Read Post »

The Japanese Circulation Society, in response to advocacy by PHA Japan, publishes lay summary of the pulmonary hypertension guidelines, June 8, 2026

The Japanese Circulation Society, in response to advocacy from the Japanese pulmonary hypertension patient association PHA Japan, has published a patient-friendly lay summary of the pulmonary hypertension guidelines. The document aims to help patients and families better understand their condition and treatment options, and to facilitate more equal, informed conversations with their doctors. As the

The Japanese Circulation Society, in response to advocacy by PHA Japan, publishes lay summary of the pulmonary hypertension guidelines, June 8, 2026 Read Post »

When science and AI converge- the evolving landscape of Pulmonary Arterial Hypertension (PAH) care – webinar, slides, and transcript

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

When science and AI converge- the evolving landscape of Pulmonary Arterial Hypertension (PAH) care – webinar, slides, and transcript Read Post »

Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project

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,

Video recording & full transcript (translatable in 40 languages) now available for the Pulmonary Hypertension Expert Patient Academy (PHEPA) joint Alliance for Pulmonary Hypertension and PHA Europe project Read Post »

The Alliance for Pulmonary Hypertension and PHA Europe launch joint project for a European Pulmonary Hypertension Expert Patient Academy! Join us for a live webinar on February 27 to learn more!

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

The Alliance for Pulmonary Hypertension and PHA Europe launch joint project for a European Pulmonary Hypertension Expert Patient Academy! Join us for a live webinar on February 27 to learn more! Read Post »

The Alliance for Pulmonary Hypertension’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants

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’s 2025 Webinar Series: Uniting the Global Community – With Gratitude to Our Speakers and Participants Read Post »

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

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

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series

The Pulmonary Hypertension Patient Engagement & Empowerment Series is a new evidence-based resource designed to help people living with pulmonary hypertension and their families and carers to be more informed, confident, and empowered. The series was developed by Pulmonary Vascular Research Institute IDDI Patient Engagement & Empowerment Workstream. The series explores 11 core themes, including:

The Pulmonary Vascular Research Institute (PVRI) launches its Pulmonary Hypertension Patient Engagement & Empowerment Series Read Post »

Publication of a new European Medicines Agency (EMA) booklet on medicine safety monitoring

The European Medicines Agency (EMA) has published a new booklet on the safety monitoring of medicines in the European Union. It provides an overview of how the European Medicines Agency and European Union Member States work to ensure that medicines used across Europe remain safe throughout their lifecycle.  The booklet is published on a new

Publication of a new European Medicines Agency (EMA) booklet on medicine safety monitoring Read Post »

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025

In an article for Pulmonary Hypertension News Colleen Steele reflects on her co-experience with her husband, Brian, concerning caregiver stress syndrome, a condition of overwhelming physical, emotional, and mental fatigue, often referred to as caregiver burnout. They describe progressing through three stages of the syndrome. Stage 1 began with their son Cullen’s diagnosis of pulmonary hypertension

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025 Read Post »

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025

Sarah Riggae is a researcher and educator who suffers from Parkinson’s disease,  In a recent article on her blog she defines what is meant by “patient engagement” and distinguishes between “primary” and “secondary” engagement.  Short summary: Primary Patient Engagement focuses on individual patient empowerment in their own healthcare journey. This includes: It’s essentially about patients having

Defining “patient engagement” and distinguishing between individual empowerment and systemic partnership and advocacy, Sara Riggae, May 20 2025 Read Post »

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open!

In 2023-24, the Alliance for Pulmonary Hypertension organized 14 successful live webinars that brought together leading experts to discuss key topics in pulmonary hypertension management, research, and patient support. The series featured speakers from 20 countries across five continents, including 24 scientific experts, 13 patients and patient advocates, and two patient engagement specialists who moderated

The Alliance for Pulmonary Hypertension live webinars are back, in a new format, starting March 26, 2025. Applications for speakers or discussion topics are open! Read Post »

Orgamites, a free global educational program about organ donation and transplantation for children aged 5-11, now being started in UK schools

The “Orgamites Mighty Education Programme” is a free global organ donation and health education programme for children aged 5-11. It uses educational resources, tools, toys, and tech to inspire and equip more students, teachers, and families everywhere to talk more about organ donation and how to take better care of our health. The Orgamites programme

Orgamites, a free global educational program about organ donation and transplantation for children aged 5-11, now being started in UK schools Read Post »

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out!

The patient booklet on lung transplant by AIPI, Italian Pulmonary Hypertension publication “Guida al Trapianto di polmoni” has been adapted and translated into English by Pisana Ferrari, President of AIPI. You can now translate the entire booklet directly from here using the orange button at the bottom of the page: 40 languages are currently available

NEW! Patient booklet on lung transplant by the Italian Pulmonary Hypertension Association AIPI now directly translatable in 40 languages on this platform! Check it out! Read Post »

Pulmonary hypertension “Question time” organised by the European Lung Foundation Pulmonary Hypertension Patient Advisory Group, May 31, 2024

Coming up on May 31st at 10 am CEST and not to be missed if you are part of the pulmonary hypertension community! The European Lung Foundation (ELF) Pulmonary Hypertension Patient Advisory Group was set up in 2023 and includes patients and patient advocates from a number of patient associations in Europe and in the

Pulmonary hypertension “Question time” organised by the European Lung Foundation Pulmonary Hypertension Patient Advisory Group, May 31, 2024 Read Post »

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages

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

Full transcripts of the Alliance for Pulmonary Hypertension’s 2023 webinars now available for in a format that can be translated into 40 languages Read Post »

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw

In today’s healthcare landscape, the patient’s perspective holds increasing sway in pivotal decision-making processes across various sectors, including governmental agencies, healthcare institutions, insurance entities, and corporate entities. As the importance of incorporating patient feedback grows, initiatives aimed at equipping patients with a deeper understanding of these processes and objectives become paramount. Recognizing this need the

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw Read Post »

Coming up on March the 1st 2024, the German Pulmonary Hypertension Association (pulmonale hypertonie e.v.)’s meeting in Hamburg

Coming up on March the 1st, 13:30 – 17:30, the German Pulmonary Hypertension Association’s Pulmonale Hypertonie E.V. ‘s meeting in Hamburg. A very comprehensive program, impressive panel of speakers! Not to be missed! Hans-Dieter KullaProf. Dr. Werner SeegerProf. Dr. Ardeshir GhofraniProf. Dr. Khodr TelloDr. Athiththan YogeswaranDr. Nils KremerProf Dr Matthias HeckerProf. Dr. Karsten KrügerProf. Dr. Natascha Sommer Find out

Coming up on March the 1st 2024, the German Pulmonary Hypertension Association (pulmonale hypertonie e.v.)’s meeting in Hamburg Read Post »

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