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 »

Unraveling the genetics of pulmonary hypertension webinar

“Unraveling the Genetics of Pulmonary Hypertension” explored the genetic underpinnings of this complex disease. Our panel of experts, including a patient, explored the latest research, information on genetic mutations associated with pulmonary hypertension, and practical guidance on genetic counseling and testing. Speakers Prof David Montani, Department of Respiratory and Intensive Care Medicine, Pulmonary Hypertension National

Unraveling the genetics of pulmonary hypertension webinar Read Post »

“Congenital heart disease and pulmonary hypertension”, an Alliance for Pulmonary Hypertension live webinar

Transcript “CONGENITAL HEART DISEASE AND PULMONARY HYPERTENSION”, MAY 18, 2024 NB. This transcript can be translated into your preferred language – use orange button at the bottom centre of this page to select it (slides are not translatable). DISCLAIMER: Despite every effort to ensure the accuracy of this transcript, we strongly encourage all visitors to consult with

“Congenital heart disease and pulmonary hypertension”, an Alliance for Pulmonary Hypertension live webinar 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 »

The Fundación Contra la Hipertensión Pulmonar, Spain, has won an important prize for its project on non-invasive remote monitoring for children with pulmonary hypertension

The Spanish Foundation for Pulmonary Hypertension, Fundación Contra la Hipertensión Pulmonar, has been selected as winner of one of the prizes of the “Inocente Foundation” for its project on “Non-invasive Remote Monitoring for children with Pulmonary Hypertension”, which will be carried out at the Ramón y Cajal University Hospital.

The Fundación Contra la Hipertensión Pulmonar, Spain, has won an important prize for its project on non-invasive remote monitoring for children with 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 »

The first pulmonary hypertension paediatric center in western Ukraine has opened in Lviv

Link: The Children’s Center for Pulmonary Hypertension in Lviv, Ukraine opened on 28 February 2024 thanks to the hard work of the Sister Dalilah Charitable Foundation, the Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA), the Paediatric Cardiology Department and hospital management teams at the St. Nicholas Hospital of the First Medical Union of Lviv and

The first pulmonary hypertension paediatric center in western Ukraine has opened in Lviv 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 »

HTaPFrance Family Weekend for children with pulmonary hypertension held in the beautiful region of Sologne, 28.9-1.10 2023

The French pulmonary hypertension association HtaPFrance has chosen the beautiful region of Sologne for the 2023 edition of the WEEF, Week-End-Enfants-Familles, and in particular the charming “Ferme de Courcimont”. Set in 11 hectares of woods, moorland and ponds, the Ferme de Courcimont is in the heart of the Sologne and less than 2 hours from Paris.

HTaPFrance Family Weekend for children with pulmonary hypertension held in the beautiful region of Sologne, 28.9-1.10 2023 Read Post »

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school

This guide, recently published by the Canadian pulmonary hypertension association, PHA Canada, is designed as a tool to help teachers and school staff learn about pulmonary hypertension and fostering open communication and understanding. The Guide includes the following documents: Read more at this link on the PHA Canada website

The Canadian pulmonary hypertension association, PHA Canada, publishes a new resource to help children and their families navigate life at school 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 »

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available

The recording of the webinar organised by the Pulmonary Hypertension Association (PHA) on June 22, 2023 is now available at this link on the PHA YouTube channel. The webinar featured Pediatric Pulmonary Hypertension experts, Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC and parents, Jayna Wall and Jeff Harpp. The panel shared an overview

Caring for a child with Paediatric Pulmonary Hypertension, recording of the live webinar organised by the Pulmonary Hypertension Association (PHA) on June 22 now available Read Post »

“My PH Family”, an organisation with a mission to provide support and resources to families of children with pulmonary Hypertension

The founders of “My PH Family” believe that educating children and families about pulmonary hypertension in a fun and engaging way can help alleviate some of the anxiety associated with the diagnosis. This is why they have created the Kiki the Koala series which provides easy-to-understand information about the condition and offers advice on living

“My PH Family”, an organisation with a mission to provide support and resources to families of children with pulmonary Hypertension Read Post »

HTaPFrance, the French pulmonary hypertension association is taking part in a run in Lyon to raise funds for a booklet for teachers to facilitate the inclusion of children with pulmonary hypertension in school – June 25, 2023

Thanks to the enthusiasm of one of its members, HTaPFrance will participate in the Lyon Heroes’ Race (Course des Héros) taking place on Sunday June 25, 2023, in the Parc de Gerland in Lyon. Participants can either run or walk (8 km race, 5 km walk and 2 km discovery course). The aim is to

HTaPFrance, the French pulmonary hypertension association is taking part in a run in Lyon to raise funds for a booklet for teachers to facilitate the inclusion of children with pulmonary hypertension in school – June 25, 2023 Read Post »

Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA)

An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link

Caring for a child with pulmonary hypertension, useful information and resources from the Pulmonary Hypertension Association (PHA) Read Post »

Pulmonary hypertension and children, a resource developed by the Pulmonary Hypertension Association UK (PHA UK)

This Pulmonary Hypertension Association UK (PHA UK) booklet on paediatric pulmonary hypertension was published with the help of experts in paediatric PH and families living with the condition It aims to help you understand more about pulmonary hypertension and the care and support available. You can order a copy by going to the PHA UK’s

Pulmonary hypertension and children, a resource developed by the Pulmonary Hypertension Association UK (PHA UK) Read Post »

TRANSLATE »
Scroll to Top