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 »

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 »

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 »

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 »

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 »

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 »

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 »

“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 »

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 »

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 »

Le Monde publishes an interview Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and the French patient association HTaPFrance team

On the occasion of Pulmonary Hypertension Awareness Month in November, the French Pulmonary Hypertension Association HTaPFrance had the great pleasure of being interviewed by the Le Monde, France’s leading daily newspaper. This collaboration with Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, facilitated by the MSD laboratory, helped to shed

Le Monde publishes an interview Prof. Marc Humbert, Director of the French National Reference Center for Pulmonary Hypertension, and the French patient association HTaPFrance team 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 »

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant!

Anne-Marie Amilhat, a 73-year-old woman from France, received a diagnosis of pulmonary arterial hypertension in 1980 and underwent heart/lung transplant surgery in 1988. Recently, she joyously marked her 35th transplant anniversary surrounded by family and friends. The celebration was graced by the presence of Prof. Philippe Dartevelle, a thoracic surgeon at Marie Lannelongue Hospital, France,

French pulmonary arterial hypertension patient Anne-Narie Amilhat celebrates 35 years from her heart/lung transplant! 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 »

Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal

Aside from the commonly observed BMPR2 gene (bone morphogenetic protein receptor 2), there are several other genes, each falling into distinct functional categories, that have been identified as contributors to pulmonary arterial hypertension development. This has led both specialized and general healthcare providers to encounter various inquiries about the necessity, methods, and potential outcomes of

Genetic counselling and testing in pulmonary arterial hypertension (PAH): a consensus statement on behalf of the International Consortium for Genetic Studies in PAH, European Respiratory Journal 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 »

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