Natalia Maeva, a patient advocate for pulmonary hypertension, attended the European Respiratory Society (ERS) Presidential Summit in Warsaw in June 2026, participating in sessions on early detection, air quality, tobacco control, climate change and lung health. Having had her own life transformed by access to specialised treatment and lung transplantation, she found the discussions on […]
Lukáš Jakovec set off from Udine, Italy, on 11 October 2025 — a trip he had been planning for over seven years. Two hundred and thirty days and 22,000 km later, with a total elevation gain of roughly 144,000 metres, he rolled into Prague, his home town. Along the way he looped through Italy, including
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
Within the framework of the PHA 2026 International Conference (June 11-14 in Dallas, Texas), the Global Allergy & Airways Patient Platform (GAAPP) and Latin Health Leaders (LDL) will convene the “Global Pulmonary Hypertension Patient Hackathon“, taking place on June 10 (full day) and June 11 (half day), with the strategic support of the Pulmonary Vascular Research Institute (PVRI) and the Pulmonary Hypertension
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,
Following the official launch of its pulmonary arterial hypertension policy toolkit in Barcelona last November at PHAEUROPE‘s Annual Conference, The Health Policy Partnership has been working on dissemination opportunities of this important work, which was endorsed by the Alliance for Pulmonary Hypertension along with several of the major patient associations active in the field. On
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 »
The newly launched EURORDIS Patient Partnership Hub brings together resources that facilitate patient-clinician collaboration within the European Reference Networks (ERNs) in one convenient location. From templates and best practice webinars to guides and factsheets, everything is available in a single place. Explore the Patient Partnership Hub at this link and watch the demo webinar here
The The Health Policy Partnership, a UK-based specialist health policy consultancy. convened a multidisciplinary group of international experts – consisting of pulmonary arterial hypertension patient advocates, cardiologists and pulmonologists – to support the development of a range of advocacy resources. The expert steering committee includes Dr Pilar Escribano Prof. Marc Humbert, Prof Nicholas Kolaitis, Prof
Chloe Temtchine is an award-winning singer, songwriter, speaker, and the creator of “Super Brave,” an interview series that features both kids and adults who are living with a chronic illness. Her dedication to the cause includes “The Chloe Temtchine Foundation” (TCTF) which supports those living with pulmonary arterial hypertension and other serious conditions. Through TCTF,
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
The “Guide to developing a Patient Journey”, published in Mars 2024 by EURORDIS, the European Rare Disease Organisation, provides step-by-step instructions, practical tips, and tools to aid patient representatives in developing Patient Journeys for their respective rare conditions. What are Patient Journeys? Patient Journeys represent an innovative approach aimed at understanding the natural progression of
The European Patient Forum (EPF) published in 2017 a booklet titled “The Added Value of Patient Organizations”, which captures the crucial role of patient organizations in healthcare policy, capacity building, peer support, and research and development, as well as the challenges they face. This booklet highlights the significant impact these organizations have on shaping health
A recent article, titled “The essential role of patients in advocacy and policy”, published in the European Heart Journal on July 21, 2023, describes the activities of the European Society of Cardiology (ESC) Patient Forum and how it is empowering patients in shaping cardiovascular care. The European Society of Cardiology established the “ESC Patient Forum”
Huge success for this year’s World Pulmonary Hypertension Day on May 5! The summer edition of the Mariposa Journal reports on the exciting events organised in 22 European countries to celebrate this occasion, and on the social media campaign which accompanied it, which reached an estimated 6 million individuals worldwide. World PH Day is a
We are proud to have been awarded a 2023 #RAREis Global Advocate Grant by Horizon Therapeutics’ #RAREis program, which recognizes contributions to advancing, educating and addressing the needs of the rare disease community. We look forward to continuing to make a meaningful difference for those affected by pulmonary hypertension! The 2023 #RAREis Global Advocate Grant program was announced in February 2023
The International Respiratory Coalition (IRC) is a coalition of respiratory clinicians and professional societies, including the European Respiratory Society (ERS) and European Lung Foundation (ELF), patients and industry partners was launched in September 2021. The second IRC Summit took place in Lisbon, Portugal on 26–27 June 2023. The event was an important opportunity for representatives
Sharing from the PHA’s Instagram page the news that that the “Safe Step Act” is moving to the US Senate floor for the first time and aims to limit step-therapy requirements. Current insurance policies in US require people to try less expensive treatments than what their doctors prescribe first. The PHA points out that for
Active Citizenship Network, together with civic and patient organizations from all over Europe, has taken the initiative to organize – every year since 2007 – the European conference dedicated to the celebration of the European Patients’ Rights Day, based on the calendar of EU institutions. Over the years, the European institutions have always shown great
Every year on May 5, pulmonary hypertension organizations and groups around the world participate in World Pulmonary Hypertension Day (WPHD) activities to raise awareness of the condition and celebrate the lives of people living with it. In 2012, a program and a scientific symposium were held in Madrid, Spain as the first World Pulmonary Hypertension
World Pulmonary Hypertension Day, May 5, 2024 Read Post »
