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 »

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out

The Argentinian Pulmonary Hypertension Association – Hipertension Pulmónar Argentina – has just released the tenth edition of the RESPIRO2 Magazine, featuring important information about pulmonary hypertension. This edition features articles about: Read this edition of RESPORO2 and past editions at this link on the Hipertension Pulmónar Argentina website.

The August 2024 edition of “RESPIRO2”, the magazine of the Argentinian Pulmonary Hypertension Association is now out Read Post »

The Asociación Nacional de Hipertensión Pulmonar ANHP, Spain, marks World Pulmonary Hypertension Day with an activity offering firsthand experience of the challenges of living with the condition

What does it feel like to carry out normal every day activities like ironing a shirt or sweeping the floor when you have pulmonary hypertension? The Asociación Nacional de Hipertensión Pulmonar ANHP will set up a booth on May 6, at the Hospital Universitario Puerta De Hierro Majadahonda, from 9:00 a.m. to 2:00 p.m., where visitors will be

The Asociación Nacional de Hipertensión Pulmonar ANHP, Spain, marks World Pulmonary Hypertension Day with an activity offering firsthand experience of the challenges of living with the condition 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 »

2023 Italian pulmonary hypertension awareness campaign wins “Best Patient Advocacy Digital Campaign of the Year”!

The 2023 awareness campaign “Viaggio alla scoperta della PAH” (A trip to discover pulmonary arterial hypertension), has won the Life Sciences Excellence award for the “Best Patient Advocacy Digital Campaign of the Year”! A very important recognition for this collaborative effort by AIPI Italian Pulmonary Hypertension Association, AMIP Associazione Malati Ipertensione Polmonare, GILS – Gruppo Italiano per la

2023 Italian pulmonary hypertension awareness campaign wins “Best Patient Advocacy Digital Campaign of the Year”! 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 cartoon video about pulmonary hypertension by the Italian Pulmonary Hypertension Association AMIP OdV, January 2024

Vittorio Vivenzio, President of the Italian Pulmonary Hypertension Association AMIP ODV, has released a new educational video on the association’s social media platforms. The video offers an easily comprehensible and “light” approach to understanding the intricate mechanisms behind the condition and the challenges of obtaining a timely and accurate diagnosis. It underscores the significance of

New cartoon video about pulmonary hypertension by the Italian Pulmonary Hypertension Association AMIP OdV, January 2024 Read Post »

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge!

As dedicated volunteers for pulmonary hypertension associations, we know just how much work there is in putting together our newsletters. Beyond content creation, it involves research, writing, photo selection, layout design, printing, and distribution. Newsletters connect communities, providing updates on crucial developments. Our mission at PH-KSP is to break barriers, fostering the exchange of knowledge

Newsletters involve a lot of effort – why limit all that work to our own local communities? Break down those borders and share the knowledge! Read Post »

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available

“Navigating Pulmonary Hypertension” is a resource for individuals living with pulmonary hypertension and their loved ones. The 60-page booklet aims to provide answers, support, and hope during the first weeks, months, or years after receiving a pulmonary hypertension diagnosis. The publication offers an overview of the diagnosis, treatment, symptoms, and quality of life. It also

The Spanish edition of “Navigating with Pulmonary Hypertension”, a booklet for the newly diagnosed by the Pulmonary Hypertension Association USA, is now available 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 brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association

AIPI, the Italian Pulmonary Hypertension Association, has just released a new booklet in Italian on pulmonary arterial hypertension, featuring a series of questions and answers, interwoven with images. Accompanying the booklet is a glossary of frequently used terms. The booklet aims to provide patients, family members and carers with concise and easy-to-understand information about pulmonary

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association 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 »

The US Pulmonary hypertension Association, PHA, is partnering with the Fundación Contra la Hipertensión Pulmonar, Spain, to host a two-part Live webinar series, simulcast in English and Spanish

November 30, 2 pm EST The first webinar, “Hope Through Research in Pulmonary Hypertension: Emerging Developments,” will review emerging pulmonary hypertension research developments and the potential impact they’ll have on the PH community. December 14, 2 pm EST The second webinar, “Hope Through Research in Pulmonary Hypertension: Clinical Trials,” will discuss the clinical trial process,

The US Pulmonary hypertension Association, PHA, is partnering with the Fundación Contra la Hipertensión Pulmonar, Spain, to host a two-part Live webinar series, simulcast in English and Spanish 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 »

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages

Did you know that the lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages: English, French, German, Greek, Italian, Polish, Portuguese (Portugal), Russian, Spanish, Romanian, Ukrainian. The English version of the lay summary was developed with the active collaboration of the two

The lay summary of the European Society of Cardiology and European Respiratory Society clinical guidelines on pulmonary hypertension is now available in 11 languages Read Post »

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