The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026

On 23–24 March 2026, the Alliance for Pulmonary Hypertension attended the Annual Board meeting of ERN-LUNG, the European Reference Network for Rare Respiratory Diseases, in Paris. The Alliance was represented by Louise Bouman, Board member of the organisation and member of the ERN-LUNG E-PAG (European Patient Advisory Group). The meeting brought together healthcare professionals, researchers, […]

The Alliance for Pulmonary Hypertension participates in the Annual Board Meeting of the European Reference Center for Rare Respiratory Diseases (ERN-LUNG), in Paris, March 23-24, 2026 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 »

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month

The UK Pulmonary Hypertension Association’s free form has been designed to help patients prepare for remote medical appointments. Completing it it beforehand can help make the most of the visits. Download the form at this link on the PHA UK website

“Making the most of remote appointments”, the UK Pulmonary Hypertension Association’s free information material of the month Read Post »

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association®

“Heart Works” key features: Real-time health data tracking: including advanced quality-of-life surveys and 6-minute walk tests, allowing patients to closely monitor their progression. Access to Phaware resources: 500+ curated phaware® podcasts, webinars, and expert interviews on pulmonary hypertension. Access to international resources: Thanks to partnerships with leading organizations including Stanford Wall Center, University of Alberta,

“Heart Works” – phaware® – a New Pulmonary Hypertension App from Phaware Global Association® 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 »

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe

Introduction The European Patients’ Forum (EPF) is a leading umbrella organisation that represents the collective interests of patient organisations across Europe. With a strong focus on equity, patient-centred care, and meaningful involvement in health policy and systems, the European Patients’ Forum brings together diverse patient voices to influence European health debates and decision-making. The organisation

The Alliance for Pulmonary Hypertension Joins European Patients’ Forum (EPF) to Help Shape the Future of Patient Advocacy in Europe Read Post »

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5

Since its inception in 2012, World Pulmonary Hypertension Day (May 5th) has evolved into a powerful global movement uniting patients, caregivers, healthcare professionals, and advocates across continents. What began as a coordinated effort to raise awareness about this rare and serious condition has grown into an international platform for education, advocacy, and community building. World

“Global Voices, One Mission: Amplify the Beat” – our motto for the 2025 edition of World Pulmonary Hypertension Day, May 5 Read Post »

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us”

The new campaign by PHA Europe “Without You There Would Be No Us” celebrates 25 years of progress in pulmonary hypertension care by honouring the contributions of health care providers, medical teams, researchers, associations, individuals, pharmaceutical companies. Through inspiring stories and gratitude, it aims to raise awareness, strengthen sponsor relationship, attract new partnerships, and highlight

The European Pulmonary Hypertension Association, PHA Europe, launches new 2025 awareness campaign, titled “Without you there would be no Us” Read Post »

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks

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

Launch of a new EURORDIS platform with resources to help plan and implement patient partnerships in healthcare networks Read Post »

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public

The Alliance for Pulmonary Hypertension is a proud member of the European Lung Foundation (ELF) Patient Organisation Network and is represented in the European Lung Foundation Pulmonary Hypertension Patient Advisory Group (PH PAG). The European Lung Foundation Patient Advisory Groups and working groups are made up of people who have an interest in a particular

The European Lung Foundation (ELF)’s 2023 Annual Report highlights its ongoing efforts to to collaborate with patients, patient organisations, healthcare professionals and the public Read Post »

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal

World Pulmonary Hypertension Day (May 5) is increasingly becoming a pivotal global event for raising awareness about the condition and advocate for improved care, as highlighted by the impressive figures shared in the latest edition of PHA Europe’s magazine, Mariposa. Launched by the Asociación Nacional de Hipertensión Pulmonar ANHP in 2012, World PH Day is

Impressive numbers for the latest edition of World Pulmonary Hypertension Day: full report in the summer 2024 edition of Mariposa, PHA Europe’s journal Read Post »

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024

Clinical practice guidelines provide essential recommendations for diagnosing and treating medical conditions. In the realm of pulmonary hypertension a groundbreaking milestone has been achieved with the inclusion of two patient representatives, Pisana Ferrari and Gergely Meszaros JD, MSc, as members of the dedicated task force and co-authors of the new guidelines jointly developed by the European Society of Cardiology and the European Respiratory

“Patient Involvement in Guidelines”, a webinar organised by ERKNet and EURORDIS, featuring Matt Bolz-Johnson as speaker, April 22, 2024 Read Post »

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension

“Pongo” serves as the mascot of the Greek Pulmonary Hypertension Association. This elephant doll features a unique characteristic: a minuscule nostril that impedes its ability to breathe adequately, leading to its striking purple hue caused by oxygen deprivation. It was create to educate children to recognize a physical diversity that may not always be visible.

On Rare Disease Day 2024 “Pongo”, the mascot of the Greek Pulmonary Hypertension Association, visited schools in Loutraki to tell children about pulmonary hypertension Read Post »

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar

This Alliance for Pulmonary Hypertension webinar marks the sixth installment in a series dedicated to delving into the groundbreaking innovations outlined in the 2022 ESC/ERS clinical guidelines for diagnosing and treating pulmonary hypertension. One particularly notable advancement is the inclusion in the guidelines, for the first time, of a new section focusing on ‘Patient Associations and

Embark on a journey to discover the history of the pulmonary hypertension association movement by revisiting the AfPH’s recent webinar Read Post »

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! Read Post »

December 5 is International Volunteer Day! A wonderful opportunity to thank all those who have contributed to the development and launch of the Alliance for Pulmonary Hypertension!

Today marks International Volunteer Day! A wonderful opportunity to express our heartfelt gratitude to all those who have generously dedicated their time and energy to the establishment and launch of the Alliance for Pulmonary Hypertension and its knowledge-sharing initiative! 🔹 The AfPH President Ioanna Alysandratou Ιωάννα Αλυσανδράτου, and Board Members Luc MATTHYSEN (Secretary) and Hans-Dieter Kulla (Treasurer) 🔹 The AfPH

December 5 is International Volunteer Day! A wonderful opportunity to thank all those who have contributed to the development and launch of the Alliance for Pulmonary Hypertension! Read Post »

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