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!
Scientific breakthroughs
The approval of sotatercept, a first-in-class activin signaling inhibitor, by major regulatory authorities (FDA March 26, EMA August 26), marked a significant expansion of treatment options, adding a fourth therapeutic class to our existing arsenal against pulmonary arterial hypertension. With multiple investigational drugs in various stages of development, the therapeutic landscape continues to evolve, demonstrating the commitment of those active in the field to continuous innovation and improved patient outcomes, and providing hope for those living with pulmonary hypertension.
Patient Voice in Scientific Congresses
At the 7th World Symposium on Pulmonary Hypertension (June 29-July 1), the “Patient Perspectives” Task Force continued its vital work, presenting important insights into unmet patient needs worldwide and calling for greater collaboration to address critical issues in care access. Patient representatives took center stage also at other major scientific congresses, including the European Society of Cardiology (ESC) (30 August – 2 September), European Respiratory Society (ERS) (27 September-1 October), and The Transplantation Society (TTS) (September 22-25), participating as speakers and panelists and bringing their unique perspectives to scientific discussions.
Patient Collaboration with HCPs
Patient associations actively collaborated with scientific experts and other patient associations through the European Reference Network for Rare Lung Diseases (ERN Lung) and the European Lung Foundation (ELF)’s Patient Advisory Groups (PAGs). The European Respiratory Society annual congress featured a dedicated European Lung Foundation “Patient Organisation Network Day”, highlighting the growing integration of patient perspectives in scientific forums.
First Global Patient Survey
The groundbreaking Pulmonary Hypertension Global Patient Survey (PH GPS), a collaborative effort between the Pulmonary Vascular Research Institute (PVRI) and patient associations worldwide, marked a significant milestone in understanding patient experiences. With 4,000 participants across 85 countries, this first-of-its-kind survey, the preliminary results of which were presented at the European Respiratory Society’s annual congress, provided invaluable insights into the lived experiences of patients and caregivers, and will help to shape the future of pulmonary hypertension care.
Industry Partnerships
The year 2024 saw strengthened collaboration between pulmonary hypertension patient associations and industry partners. This was particularly evident in scientific forums such as the European Respiratory Society‘s annual congress, where patient representatives participated as expert panelists in industry-led symposia. Expert patients are also increasingly being involved in industry advisory boards and patient councils, demonstrating the growing recognition of patient experience in advancing medical innovation
Knowledge Sharing and Education
The Alliance for Pulmonary Hypertension’s Knowledge Sharing Platform, launched in May 2023, has grown significantly and now houses about 800 resources in multiple formats, including comprehensive materials from the Alliance’s webinar series (14 in total, with 8 held in 2024). The platform’s “News” section is updated almost daily, ensuring our community stays current with the latest developments in pulmonary hypertension care and research. With content available in 40 languages through its translation feature, the platform ensures global accessibility of information. Additional valuable educational resources were provided globally through PHA Europe’s BelAir Center and the Pulmonary Hypertension Association USA’s PHA Classroom.
Global Patient-led Educational Events
Three important educational events in the course of the year contributed to strengthening the global knowledge-sharing network and international ties: the US Pulmonary Hypertension Association (PHA)’s 15th international conference (August 15-18), which gathered over 1,000 healthcare professionals, researchers, patients, and advocates, PHA Europe’s Annual Pulmonary Hypertension European Conference (APHEC) (November 6-10 ), which saw the participation of 70 delegates from 42 patient organizations across 37 countries, and the International Symposium on Pulmonary Hypertension and 9th Meeting of the Latin American Leaders (December 6-7 ), which united 16 patient organizations and healthcare professionals from Central and Latin America.
Global awareness and advocacy
Advocacy and awareness efforts, such as World Pulmonary Hypertension Day (May 5), Pulmonary Hypertension Awareness Month (November) and Chronic Thromboembolic Pulmonary Hypertension (CTEPH) Day (November 13), allowed patient communities to unite and amplify the voices of those affected by pulmonary hypertension. These campaigns go beyond traditional awareness raising and advocacy, creating platforms for patient education, community building, and scientific engagement.
Local Community Support
National patient associations demonstrated remarkable local engagement throughout 2024, organizing information days, regional conferences, fundraising events, patient-doctor meetings, awareness walks, and mentor/buddy programs and helplines. These activities played a crucial role in supporting patients, educating healthcare professionals, raising critical funds, and ensuring patients and their families felt connected, informed, and empowered.
Looking Forward
As we enter 2025, our community stands stronger than ever. While celebrating this year’s achievements, we remain focused on our mission: improving lives through research, advocacy, and support. The integration of patient perspectives into every aspect of pulmonary hypertension research and care sets a new standard for the future. We are deeply grateful to everyone who contributed to these achievements.
