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 »

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

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

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 »

Living with Chronic Lung Allograft Dysfunction (CLAD), a live webinar organised by ESOT, the European Society for Organ Transplant, March 18, 2026

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

Living with Chronic Lung Allograft Dysfunction (CLAD), a live webinar organised by ESOT, the European Society for Organ Transplant, March 18, 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 »

Understanding the Connection Between Pulmonary Hypertension & Scleroderma, live webinar by the Canadian Pulmonary Hypertension Association PHA Canada, January 13, 2025

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

Understanding the Connection Between Pulmonary Hypertension & Scleroderma, live webinar by the Canadian Pulmonary Hypertension Association PHA Canada, January 13, 2025 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 »

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 »

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”.

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

The Rising Crisis of Meth-Associated Pulmonary Hypertension in America, a special edition series of the phaware podcast “I’m aware that I am rare”. Read Post »

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI

The IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute has created an 11-part series to support people living with pulmonary hypertension, and for their families and carers. The series is designed to help people living with pulmonary hypertension to feel more informed, confident and empowered.  Empowerment means gaining the knowledge, skills,

“How to empower yourself & others”, an 11-part series to support pulmonary hypertension patients created by the IDDI Patient Engagement and Empowerment Workstream of the Pulmonary Vascular Research Institute, PVRI Read Post »

Returning from the World Transplant Games full of emotions, Maggy Surace, double lung transplant recipient, President of the French Pulmonary Hypertension Association HTaPFrance

Maggy Surace is the President of the French Pulmonary Hypertension Association HTaPFrance and a double lung transplant recipient. She was among the 1,513 athletes from 50 different countries participating in the World Transplant Games in Dresden, Germany on August 17-24, 2025. Maggy trained for over 4 months for the swimming and athletics events. She left

Returning from the World Transplant Games full of emotions, Maggy Surace, double lung transplant recipient, President of the French Pulmonary Hypertension Association HTaPFrance Read Post »

The World Transplant Games 2025, August 17-24 2025, Dresden, Germany

The World Transplant Games are a remarkable international multisport event that brings together transplant recipients, living donors, donor families, supporters and friends to celebrate the Gift of Life and show the positive impact of organ donation. The games span seven days, featuring a program of both high-exertion and low-impact sports, with 2,500 participants, families, and

The World Transplant Games 2025, August 17-24 2025, Dresden, Germany Read Post »

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025

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

Making the case for advancing patient authorship and collaboration in peer-reviewed publications, Jan Geissler et Al., The Patient, July 2, 2025 Read Post »

“Breath Beyond Borders” Challenge, Pulmonary Vascular Research Institute (PVRI) – November 2025 PH Awareness Month

Members and supporters of the Pulmonary Vascular Research Institute (PVRI) are taking on a global challenge to raise awareness for pulmonary hypertension (PH). So far, 24 participants have pledged a combined 3,901 km (2,438 miles) — enough to travel from Athens to Dublin, crossing 12 countries! Why Dublin? The virtual “arrival” in Dublin is particularly

“Breath Beyond Borders” Challenge, Pulmonary Vascular Research Institute (PVRI) – November 2025 PH Awareness Month Read Post »

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant

Award-winning singer-songwriter Chloe Temtchine has released a new single “Heaven in the Darkest Place” featuring rapper Freeway. The song is inspired by Temtchine’s own near-death experience and life-saving double-lung transplant. Key collaborator: Freeway brings personal significance to the track – he received a kidney transplant in 2019. Broader purpose: The song serves as the official

Award-Winning Singer-Songwriter Chloe Temtchine Releases New Song Featuring Hip-Hop Icon Freeway to raise awareness of pulmonary hypertension and organ transplant Read Post »

Roham Zamanian, MD, FCCP discusses the concept of “disease modification” in the treatment of pulmonary hypertension in a PHAWARE global association podcast

Dr. Roham Zamanian MD, FCCP, discusses the concept of “disease modification” in the treatment of pulmonary hypertension. He describes how this idea emerged from discussions with colleagues about the future of pulmonary hypertension therapies, and the potential for treatments to impact the underlying disease process beyond just reducing pulmonary artery pressures. Listen to the podcase

Roham Zamanian, MD, FCCP discusses the concept of “disease modification” in the treatment of pulmonary hypertension in a PHAWARE global association podcast Read Post »

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