Mark the date for the National Pulmonary Hypertension Information Day in the Netherlands, November 22, 2025!

🫁 National Pulmonary Hypertension Information Day Date: 22 November 2025 | Time: 10:15 – 16:00Location: Congrescentrum De Schakel, Oranjelaan 10, 3862 CX Nijkerk 📍 Venue: Congrescentrum De Schakel, Nijkerk🎈 Theme: “Stronger Together”🎤 Chair: Arieke van Liere An inspiring day full of information, recognition, and connection—especially for people living with pulmonary hypertension, their loved ones, and […]

Mark the date for the National Pulmonary Hypertension Information Day in the Netherlands, November 22, 2025! Read Post »

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development

Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association, was recently invited to share her experience as a EUPATI Nederland fellow. Pulmonary Hypertension: Rare and Complex In pulmonary hypertension, blood pressure in the lung vessels is too high due to narrowing of the pulmonary arteries. This overloads the right heart chamber, making it increasingly difficult

Interview with Louise Bouman, Chair of the Dutch Pulmonary Hypertension Association on the importance of patient involvement in healthcare policies and drug development Read Post »

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw

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

Training pulmonary hypertension patients to become “experts” and advocates: a great initiative by the Belgian pulmonary hypertension association Pulmonale Hypertonie vzw Read Post »

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources

The Stichting Pulmonale Hypertensie / PH Association the Netherlands has expanded their website considerably with articles about different aspects of living with pulmonary hypertension: 🔹 Intimacy and sexuality🔹 Studying with PH🔹 PH and work🔹 Financial issues🔹 Nutrition🔹 Travel and holidays🔹 Children and PH🔹 Exercise and sports🔹 Government support at home🔹 Benefits for disable people NB!

The Dutch Pulmonary Hypertension Association expands its website to include a very comprehensive range of new resources Read Post »

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation Read Post »

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry

Important news for French-speaking pulmonary hypertension patients in Belgium and, indeed, in the rest of the world! PH Belgium – Pulmonale Hypertensie vzw, in collaboration with HTAP Belgique and Prof. Dr. Jean-Luc Vachiery is organising a series of webinars in French addressing a wide range of topics related to pulmonary hypertension including R&D, multidisciplinary care, the role of nurses in the coordination

New webinar series on pulmonary hypertension in French by Belgian associations VZW and HTAP Belgique in collaboration with renowned expert Prof. Jean-Luc Vachéry Read Post »

Dr. Karin Boomars, a pulmonologist at Erasmus MC, Netherlands, explores possible treatment options for pulmonary hypertension with unclear and/or multifactorial origins, WHO Group 5

Louise Bouman, President of the Dutch Pulmonary Hypertension association, shared this article from the end-of-year edition of the association’s magazine “Papillon”. The article is about one of the five pulmonary hypertension groups classified by the World Health Organisation (WHO). Louise has also very kindly provided us with an English translation (see bottom of page for

Dr. Karin Boomars, a pulmonologist at Erasmus MC, Netherlands, explores possible treatment options for pulmonary hypertension with unclear and/or multifactorial origins, WHO Group 5 Read Post »

Prof. Frances de Man has been awarded a grant from the Dutch Heart Foundation for her research on the prevention of right heart failure in pulmonary hypertension

The Dutch Heart Foundation has awarded an “Established Investigator” grant to Prof. Dr. Frances de Man from the Amsterdam UMC. She is conducting research to better understand and prevent right heart failure in pulmonary hypertension. When the blood pressure in the lungs is too high (in pulmonary hypertension), the right ventricle has to work harder

Prof. Frances de Man has been awarded a grant from the Dutch Heart Foundation for her research on the prevention of right heart failure in pulmonary hypertension Read Post »

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023

The Directorate-General for Health and Food Safety of the European Commission has just issued a new booklet on European Reference Networks (ERNs). European Reference Networks are virtual networks connecting healthcare providers, professionals and patient organisations across the European Union (EU) and Norway. The rationale behind their establishment is that no country alone has the knowledge

A fresh booklet for those unfamiliar with European Reference Networks (ERNs) and their role in rare disease patient care, Novemebr 25, 2023 Read Post »

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension

We would like to thank our friends and colleagues at the Dutch Pulmonary Hypertension Association for having shared with us the very touching story of Rob van der Aa. Rob is a remarkable individual who, regardless of the physical toll of pulmonary arterial hypertension, strives to contribute meaningfully to society, dedicating himself to both academic

Unyielding Spirit: Rob van der Aa’s inspiring journey with hereditary pulmonary arterial hypertension Read Post »

“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl

On the occasion of Rare Disease Day 2022 EURORDIS, the European Rare Disease Organisation, in collaboration with its national alliance rare disease patient organisation partners, put together a “School toolkit” to explain living with a rare disease to children and teenagers. These resources were translated in over 20 languages. One of these resources “A Friendship

“A Friendship Story” a resource for children with pulmonary arterial hypertension by Serbian patient and author Danijela Pešić, with illustrations by Ivan Drajzl Read Post »

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension

A delightful children’s book titled “Casper – the Bear with Blue Lips” debuted on September 30, 2023, at 11:30 a.m. in Bulgaria’s literary club “Peroto” within the National Palace of Culture (NDK). Authored by Natalia Maeva, an accomplished journalist and (former) patient, President of the Bulgarian Society for Pulmonary Hypertension BSPPH, the book introduces young

“Casper – the Bear with Blue Lips”, a new booklet introducing children 4-10 years of age to pulmonary hypertension Read Post »

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages!

“EUPATI” stands for European Patient Academy on Therapeutic Innovation. Its mission is to provide accessible, innovative and inclusive education that empowers patients and patient representatives with the right knowledge, skills and competencies to effectively engage and partner with all other stakeholders in medicines R&D. The EUPATI Toolbox is organised in two main areas: Medicines R&D

Want to find out more about Medicines R & D and Patient Engagement? Check out the EUPATI Toolbox, now available in 14 languages! Read Post »

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc)

Prof. Serpil Erzurum is Cleveland Clinic’s Chief Research and Academic Officer and Chair of the Lerner Research Institute. Dr. Erzurum has won numerous awards, has published more than 300 articles, and is among the top 1% cited researchers in the world. This interview was originally published in English on Nefes, the magazine of the Turkish

Exclusive interview with Prof. Serpil Erzurum, MD, Cleveland Clinic’s Chief Research and Academic Officer, for the Turkish pulmonary Hypertension Association (PAHSSc) Read Post »

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc

Prof. Lewis J. Rubin with Kamil Hamidullah, immediate past President of the PAHSSc This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc in December 2021.Our sincerest thanks go to our friends and colleagues at the PAHSSc for graciously allowing us to republish this interview and share with

Esclusive interview with Emeritus Professor Lewis J. Rubin, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023

On August 4, 2023 the Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), held an event in Riga, the capital of Latvia, to celebrate its 12th anniversary. Check out our article about this event at this link. The association took this occasion to launch a new and very useful resource for patients. The new booklet,

The Latvian Pulmonary Hypertension Association, Pulmonālās Hipertensijas Biedrība (PHB), launches information booklet on clinical trials to celebrate its 12th anniversary, August 4, 2023 Read Post »

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc

This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, in June 2022. We extend our sincerest thanks to our friends and colleagues at the PAHSSc for graciously permitting us to republish and share it with the wider pulmonary hypertension community. Professor Maurice Beghetti is Head of

Exclusive interview with Prof. Maurice Beghetti on pulmonary arterial hypertension and Eisenmenger Syndrome in children and adolescents for the Turkish Pulmonary Hypertension Association, PAHSSc Read Post »

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc

Photo: Prof. Sean Gaine with Kamil Hamidullah, immediate Past President of PAHSSc, the Turkish Pulmonary Hypertension Association. This interview was originally published in Turkish on Nefes, the magazine of the Turkish Pulmonary Hypertension Association PAHSSc, on the March 2023 edition. Our sincerest thanks go to the PAHSSc for very generously sharing this interview with the

Exclusive interview with Prof. Sean Gaine, Director of the Irish National Pulmonary Hypertension Unit, for the Turkish Pulmonary Hypertension Association PAHSSc Read Post »

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript ARADIGM FOR PULMONARY HYPERTENSION CARE”, June 6, 2023 NB. This transcript can be translated into your preferred language – use orange button at

Slides and recording of our webinar on “Patients as Partners and Shared Decision Making” -June 6, 2023 Read Post »

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