RARE 2025 Congress, October 8, 2025: Presenting research by the French Pulmonary Hypertension Association HTaPFrance on explaining the condition to children

A poster presented by the French Pulmonary Hypertension association HTaPFrance was displayed at the RARE 2025 Congress on October 8, 2025– see photo below with HTaPFrance President Maggy Surace. The poster presents data from a questionnaire that was sent to patients’ families and to the patients. It summarizes the section “Understanding the disease at the […]

RARE 2025 Congress, October 8, 2025: Presenting research by the French Pulmonary Hypertension Association HTaPFrance on explaining the condition to children Read Post »

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 »

Date announced for the 2025 edition of the French pulmonary hypertension association HTaPFrance’s Children and Family Weekend, May 29-31, 2025

The French pulmonary hypertension association HTaPFrance has announced the date for its yearly WEEF, Children and Family Weekend, May 29-31, 2025, at the CIS Lamourelle in Carcassonne The Children’s and Family Weekend is an opportunity to: – Meet other children/young people and other families – Better understand what pulmonary arterial hypertension is and to live

Date announced for the 2025 edition of the French pulmonary hypertension association HTaPFrance’s Children and Family Weekend, May 29-31, 2025 Read Post »

Génération HTAP, a French association that supports children and families affected by pulmonary hypertension, launches its new website

Génération HTAP is a French association that supports children and families affected by pulmonary arterial hypertension. Their key activity is the creation and promotion of opportunities for children to meet, so they feel less alone in facing this illness. They announced the launch of the Generation HTAP website on social media on May 21, 2024,

Génération HTAP, a French association that supports children and families affected by pulmonary hypertension, launches its new website Read Post »

April 2024 edition of “Brev’Info”, the French pulmonary hypertension association HTaPFrance’s monthly newsletter, is now out

Very busy month for the French pulmonary hypertension association HTaPFrance: a report on the April activities, of the election of the new Members of the Board and announcements for future activities. These include a golf tournament on May 24, the participation in the Course des héros on June 16, and the organisation of patient education

April 2024 edition of “Brev’Info”, the French pulmonary hypertension association HTaPFrance’s monthly newsletter, is now out Read Post »

The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension

Last year the Canadian Pulmonary Hypertension Association, PHA Canada, conducted a survey to explore the financial and employment impacts of pulmonary arterial hypertension in Canada. The aim of the research was to understand how this condition affects patients’ work and daily activities. The survey also captured information about patients’ need for caregivers and the impact

The Canadian Pulmonary Hypertension Association, PHA Canada, publishes results of its survey on socio-economic burden of pulmonary hypertension Read Post »

Outsanding scientific program for the French Pulmonary Hypertension Association’s Annual General Assembly, April 6 2024

The Annual General Assembly of the French Pulmonary Hypertension Association HTaPFrance is taking place in Paris on Saturday the 6th of April 2024 in Paris. The morning program is dedicated to the presentation of the annual report of activities, vote on financial report and approval of new members of the Board. The afternoon program features

Outsanding scientific program for the French Pulmonary Hypertension Association’s Annual General Assembly, April 6 2024 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 »

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance

We are thrilled to share a remarkable project undertaken by the French Pulmonary Hypertension Association, HTaPFrance. In collaboration with the talented author, Thomas Penin, they have brought to life a poignant story through a graphic novel. The graphic novel revolves around a fictional woman patient grappling with pulmonary arterial hypertension. The protagonist embarks on a

“Second souffle” (Second breath), a graphic novel about living with pulmonary arterial hypertension, just published by the French Pulmonary Hypertension Association HTaPFrance 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 »

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France

Les Entreprises du Médicament, Leem, is the French industry association which represents drug companies operating in France. During the course of November 2023 Leem organised a two-part video series on Patient Reported Outcome Measures. Round Table 1- 06/11/2023 – PROMs, PREMs, Patient Surveys: What are we talking about and for what purposes? Moderator: Dr. Thomas

Two part video series on Patient Reported Outcome Measures (PROMs): what they are and how to collect and use them, by Leem France Read Post »

TRANSLATE »
Scroll to Top