10-year Data on Oral Selexipag: Long-Term Survival, Safety, and Dosing Insights in Pulmonary Arterial Hypertension (PAH), oral session at ISHLT congress, April 29, 2025 

Selexipag is an oral selective IP prostacyclin receptor agonist. This study, presented during an oral session at the International Society for Heart and Lung Transplant (ISHLT) congress on April 29, 2025, provides the longest follow-up data available for any pulmonary arterial hypertension therapy, tracking 574 patients originally randomized to selexipag in the GRIPHON trial, with […]

10-year Data on Oral Selexipag: Long-Term Survival, Safety, and Dosing Insights in Pulmonary Arterial Hypertension (PAH), oral session at ISHLT congress, April 29, 2025  Read Post »

PVRI International Conference 2025 report, Navneet Singh, Katarina Zeder, Pulmonary Circulation, May 1, 2025

An editorial titled “PVRI International Conference 2025: Embracing Heterogeneity”, published in Pulmonary Circulation on May 1, 2025, summarizes the 2025 PVRI International Conference held in Rio de Janeiro, Brazil. The four-day gathering brought together experts from 25 countries across 5 continents to discuss advances in early diagnosis, risk stratification, and treatment approaches for various forms

PVRI International Conference 2025 report, Navneet Singh, Katarina Zeder, Pulmonary Circulation, May 1, 2025 Read Post »

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025

We were unfortunately unable to attend the European Parliament event which took place on March 5, 2025, but have read the minutes with great interest. Based on these we have put together some key takeaways as this topic is very relevant to pulmonary arterial hypertension patients, who are predominantly women. Opening Member of the European

“A wake-up call: key trends and policy asks for cardiovascular health in women”, European Parliament event, March 5, 2025 Read Post »

Latest edition on “Mariposa” the quarterly magazine of the European PH organisation PHA Europe, is now out covering the annual conference, World PH Day and much more

In the Editor’s Note to “Mariposa” Hall Skaara, project manager at PHA Europe, highlights the organisation’s key 2024 achievements: Download the full issue of the magazine at this link on the PHA Europe website

Latest edition on “Mariposa” the quarterly magazine of the European PH organisation PHA Europe, is now out covering the annual conference, World PH Day and much more Read Post »

Gabi Oniscu, Professor of Transplantation Surgery at the Karolinska Institutet, Sweden, and President of the European Society for Organ Transplantation (ESOT) speaking at TEDX Sweden, March 29, 2025

Gabi Oniscu, Professor of Transplantation Surgery at the Karolinska Institutet, Sweden, and President of the European Society for Organ Transplantation (ESOT), is schedule to give a TedX talk about ”The power of three: death, life and the gift in between”. He has written on his LinkedIn page that he will recount three stories “that capture

Gabi Oniscu, Professor of Transplantation Surgery at the Karolinska Institutet, Sweden, and President of the European Society for Organ Transplantation (ESOT) speaking at TEDX Sweden, March 29, 2025 Read Post »

Patient participation at the 2nd European Society of Cardiology CRT, Cardiovascular Round Table, on “How can cardiologists take the lead in moving AI forward”, Guermantes, France, March 26-27, 2025

The European Society of Cardiology‘s 2025 CRT – Cardiovascular Round Table – took place on 26-27 March in Guermantes, France. This gathering united approximately 80 participants representing the scientific community, pharma and tech industries, and patient advocates, to explore the transformative theme “Working together to move forward AI in cardiology.” The meeting carefully balanced informative

Patient participation at the 2nd European Society of Cardiology CRT, Cardiovascular Round Table, on “How can cardiologists take the lead in moving AI forward”, Guermantes, France, March 26-27, 2025 Read Post »

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025

The annual Board meeting of the ERN-LUNG – European Reference Network for rare respiratory diseases, took place in Paris on March 24-25, 2025, with over 100 participants, not only from the EU but also UK, US and Canada. Two European patient representatives, Pisana Ferrari and Hall Skaara, (2nd and 3rd from left in the cover

Advancing pulmonary hypertension care at the ERN-Lung Annual Board meeting, Paris, March 24-25, 2025 Read Post »

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones

The year 2024 has seen significant progress in the fight against pulmonary hypertension, marked by critical milestones across research, clinical care, advocacy, awareness, and patient engagement, with an unprecedented level of patient involvement in scientific discourse. As we head into 2025 with all that has been achieved we are well positioned in furthering our mission!

Stronger Together: Celebrating the Pulmonary Hypertension Community’s 2024 Milestones Read Post »

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope

On Saturday, November 23, 2024, the Dutch National Pulmonary Hypertension Information Day brought together patients, caregivers, and medical professionals for an inspiring and informative symposium. This annual event, designed specifically for pulmonary hypertension patients and their loved ones, offered a full day of learning, connection, and support. The event was expertly chaired by Dr. Sanne

National Dutch Pulmonary Hypertension Information Day: A Blend of Education, Connection, and Hope Read Post »

Knowledge, Support, and Hope: a report of the 2024 Patient Conference organised by the German Pulmonary Hypertension Association ph e.v.

The German Pulmonary Hypertension (PH) Association ph e.v. hosted a comprehensive two-day patient conference in Frankfurt, designed to provide education, support, and networking opportunities for individuals affected by pulmonary hypertension. The conference, held on October 25-26, 2024, offered a rich and diverse program that addressed multiple aspects of living with pulmonary hypertension. The first day

Knowledge, Support, and Hope: a report of the 2024 Patient Conference organised by the German Pulmonary Hypertension Association ph e.v. Read Post »

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru

The Sociedad Latina de Hipertensión Pulmonar SLHP, the Colegio Médico del Perú Región Lima and the pulmonary hypertension patient association “Llapan Kallpa”, are inviting to the ,The International Symposium on Pulmonary Hypertension and the 9th meeting of Latin American leaders being held on 6-7 December, with the participation of esteemed professionals including Dr. Pilar Escribano,

Starting today, December 6, 2024, the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders, Miraflores, Peru Read Post »

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform

The videos of the presentations and recorded sessions from the PHA Europe Annual Pulmonary Hypertension European Conference (APHEC) 2024, held in Castelldefels, Barcelona, Spain, are now available on the Bel Air Center platform. 1. Prof. Ardeschir Ghofrani: Current and future pulmonary hypertension treatments 2. Prof. Polona Mlakar: Chronic thromboembolic pulmonary hypertension (CTEPH) 3. Prof. Mona

Video-recordings of all the presentations from the PHA Europe Annual PH Conference, which took place on November 6-10, 2024, now available on the Bel Air Center platform Read Post »

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona

Quote from Louise’s article for the Dutch PH Association From November 6 to 10, 2024, it was time to the Annual General Meeting and Conference of PHA Europe. More than 70 delegates from 42 national organizations representing 37 countries participated. The Netherlands was represented by Korrie de Koning and Louise Bouman, secretary and chair of

AfPH Board Member Louise Bouman reporting from the Annual PH Conference (APHEC) organised by PHA Europe in Barcelona Read Post »

“The Aristotle Classes on Pulmonary Hypertension (PH) and Adult Congenital Heart Disease (ACHD)”, October 12, 2024, Thessaloniki, Greece

The President of the Greek patient association Hellenic Community for pulmonary hypertension and of the Alliance for Pulmonary Hypertension Ioanna Alysandratou Ιωάννα Αλυσανδράτου was invited to address the “Aristotele classes on pulmonary hypertension (PH) and congenital heart disease (CHD)” congress on the 12th of October 2024. Her participation is important as it brings the vital

“The Aristotle Classes on Pulmonary Hypertension (PH) and Adult Congenital Heart Disease (ACHD)”, October 12, 2024, Thessaloniki, Greece Read Post »

Patient centered care at the heart of The Transplantation Society’s Annual Congress in Istanbul, 22-25 September 2024

The 30th The Transplantation Society (TTS) Annual Congress in Istanbul brought together over 2.500 transplant professionals from 90 countries, with a further 500 attending remotely. It began with a memorable opening ceremony, attended by prominent figures such as the Minister of Health, the Governor, and the Mayor of Istanbul. The ceremony featured a compelling speech

Patient centered care at the heart of The Transplantation Society’s Annual Congress in Istanbul, 22-25 September 2024 Read Post »

Sharing best practices in lung transplantation: Prof. Dr. Walter Klepetko receives prestigious ELF award for establishing a EU-wide training program

Welcome to the third edition of the Alliance for Pulmonary Hypertension’s “Sharing best practices” series of articles. See also: Sharing best practices on how to implement shared decision making and support patient empowerment: Prof. Marc Humbert, Head of the French Pulmonary Hypertension National Referral network Sharing best practices in chronic thromboembolic pulmonary hypertension surgical and

Sharing best practices in lung transplantation: Prof. Dr. Walter Klepetko receives prestigious ELF award for establishing a EU-wide training program Read Post »

“Integrating the patient perspective into future pulmonary hypertension clinical trials”, European Society of Cardiology Annual Congress 2024, talk by Pisana Ferrari, member of the ESC Patient Forum

The European Society of Cardiology’s Congress is the foremost gathering in the field of cardiology worldwide. This year’s edition took place in London from 30.8-1.9, 2024, and counted 31,700 participants from 162 countries, including 5,400 faculty and presenters, representatives of the National Cardiac Societies and industry partners. Pisana Ferrari, the Alliance for Pulmonary Hypertension’s Secretary

“Integrating the patient perspective into future pulmonary hypertension clinical trials”, European Society of Cardiology Annual Congress 2024, talk by Pisana Ferrari, member of the ESC Patient Forum Read Post »

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