“Transplantation Roadmap: Understanding the Role of Risk Assessment in Your Pulmonary Hypertension Plan”, June 2, 2026, 3 p.m. EDT

The Pulmonary Hypertension Association, PHA, is hosting a free webinar on transplant evaluation for people living with pulmonary hypertension and their caregivers. The session will cover how risk assessment works, how risk scores guide transplant referral and timing, and what questions to ask your care team — with perspectives on both adult and paediatric patients. […]

“Transplantation Roadmap: Understanding the Role of Risk Assessment in Your Pulmonary Hypertension Plan”, June 2, 2026, 3 p.m. EDT Read Post »

Monthly roundup of content shared on the Pulmonary Hypertension Knowledge Sharing Platform – April 2026

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

Monthly roundup of content shared on the Pulmonary Hypertension Knowledge Sharing Platform – April 2026 Read Post »

The latest edition of “Connections”, the Canadian Pulmonary Hypertension Association (PHA Canada)’s twice-yearly magazine, is dedicated to raising awareness of organ donation and transplant

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

The latest edition of “Connections”, the Canadian Pulmonary Hypertension Association (PHA Canada)’s twice-yearly magazine, is dedicated to raising awareness of organ donation and transplant Read Post »

15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026

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

15,000 km, 177 Days, 5 countries, One Mission: Lukáš Jakovec Keeps Pedalling for our “Wheels of Hope” campaign for organ donation and transplant, April 6, 2026 Read Post »

What life is like now: 20+ years post lung transplant, a live webinar organised by the Lung Transplant Foundation, January 16, 2026

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

What life is like now: 20+ years post lung transplant, a live webinar organised by the Lung Transplant Foundation, January 16, 2026 Read Post »

“Wheels of Hope” – Raising Awareness for Organ Donation – end-of-year campaign recap, December 31, 2025

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

“Wheels of Hope” – Raising Awareness for Organ Donation – end-of-year campaign recap, December 31, 2025 Read Post »

Approach to Lung Transplantation in Pulmonary Arterial Hypertension: A Delphi Consensus on Behalf of the Transplant Task Force of the Pulmonary Vascular Research Institute (PVRI), April 2025

A modified Delphi consensus was conducted by the Pulmonary Vascular Research Institute (PVRI) Lung Transplantation Workstream, involving 29 international experts on pulmonary arterial hypertension (PAH) and lung transplantation. The process generated consensus ( mean scores >_2.5 on Likert scale ) across 141 out of 223 statements relating to when to refer pulmonary arterial hypertension patients

Approach to Lung Transplantation in Pulmonary Arterial Hypertension: A Delphi Consensus on Behalf of the Transplant Task Force of the Pulmonary Vascular Research Institute (PVRI), April 2025 Read Post »

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained!

On October 11, the European Directorate for the Quality of Medicines & HealthCare (EDQM), Council of Europe European Donation Day, the Alliance for Pulmonary Hypertension launched a campaign to to honour donors and their families, to celebrate life after transplant, and to call for greater awareness of the urgent need for organ donation. The six

Celebrating “European Donation Day 2025” October 11: Six Friends and Colleagues, Six Second Chances, 80 years of life gained! Read Post »

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025

Introduction: A Mission on Two Wheels On October 11, 2025—European Donation Day, organised yearly by the the Council of Europe—the Alliance for Pulmonary Hypertension launched “Wheels of Hope,” an extraordinary campaign that combines athletic endurance, culinary culture, and life-saving advocacy. Czech chef and athlete Lukáš Jakovec embarked on a 9-month cycling journey from Udine, Italy,

“WHEELS OF HOPE”: Our 9-Month Cycling Journey Across Europe to Champion Organ Donation launched today, October 11, European Donation Day 2025 Read Post »

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants!

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

Proud to celebrate the 14 live webinars we have organised since the series launched in June 2023! A huge thank you to all our speakers and participants! Read Post »

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages!

The Pulmonary Vascular Research Institute (PVRI) organised a patient-directed webinar on “Debunking Myths of Lung Transplantation” on September 25, 2024. This was an outstanding webinar: the explanations were exceptionally clear and delivered in easy-to-understand language, covering every step of the transplant journey—from getting listed and preparing for surgery, through the operation and immediate post-op, to

Full transcript of the PVRI live webinar on “Debunking myths about Lung Transplantation”, September 25, 2024, now available and translatable in 50 languages! 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 »

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris

Anne-Marie Amilhat, who is one of the world’s longest-living heart-lung transplant recipients (36 years post surgery!) was among the 11,000 people who carried the Olympic flame from Athens to Paris. On May 17th Anne-Marie carried the torch between Toulouse and Auch. The news was reported in the April 2024 edition of the French pulmonary hypertension

Anne-Marie Amilhat, one of the world’s longest-living heart-lung transplant recipients (36 years!) was among the 11,000 people who carried the Olympic flame from Athens to Paris Read Post »

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one

If you have undergone a lung or heart transplant, or are you considering or preparing to receive a transplant, consider join the Pulmonary Hypertension Association USA (PHA)’s new “Transplant for Pulmonary Hypertension” Facebook Group, to connect with others who have received a transplant or are in the transplantation process. Sign up at this link on

New! The Pulmonary Hypertension Association (PHA) launches Facebook page for pulmonary hypertension patients having undergone a lung transplant or preparing to receive one Read Post »

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation

The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work

A European Society for Organ Transplant (ESOT) call to action for a a European effort to monitoring health of patients after transplantation Read Post »

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories

http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories Read Post »

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