Treatment options for children with pulmonary arterial hypertension associated with congenital heart disease (PH-CHD), Expert Review of Respiratory Medicine, October 30, 2025

Pulmonary hypertension associated with congenital heart disease (PAH-CHD) is one of the most common causes of pulmonary hypertension in children. Patients fall into different subgroups, each requiring specific treatment approaches. According to an article recently published in the Expert Review of Respiratory Medicine current management is clear for two groups: The challenge The management of […]

Treatment options for children with pulmonary arterial hypertension associated with congenital heart disease (PH-CHD), Expert Review of Respiratory Medicine, October 30, 2025 Read Post »

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 »

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025

In an article for Pulmonary Hypertension News Colleen Steele reflects on her co-experience with her husband, Brian, concerning caregiver stress syndrome, a condition of overwhelming physical, emotional, and mental fatigue, often referred to as caregiver burnout. They describe progressing through three stages of the syndrome. Stage 1 began with their son Cullen’s diagnosis of pulmonary hypertension

«Confessions of a Tired and Lonely Caregiver», Colleen Steele, Pulmonary Hypertension News, July 21, 2025 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 »

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 »

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are

“Exploring PH with KiKi the Koala” has been written and designed by 22-year-old Maryam, who was inspired by her little sister Fatima’s experiences with pulmonary hypertension. The book is aimed at children aged around three to nine. Readers can follow KiKi’s journey through learning how to cope with pulmonary hypertension and learning just how special

“Exploring pulmonary hypertension with Kiki the Koala”, a new booklet to help children understand and come to terms with their pulmonary hypertension – by realising just how special they are 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 »

“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 »

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 »

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages!

“Diagnosing and treating pulmonary hypertension – understanding the professional guidelines” is an easy to understand summary of the joint European Society of Cardiology (ESC) and European Respiratory Society (ERS) clinical guidelines for pulmonary hypertension (PH). It was published on the European Lung Foundation (ELF) website on 02/11/2022. It is for people with pulmonary hypertension, or

Lay summary of the 2022 ESC/ERS clinical guidelines on the diagnosis and treatment of pulmonary hypertension now available in 11 languages! 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 »

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS)

The work of two years of the Task Force in charge of the new European Society of Cardiology (ESC) and European Respiratory Society (ERS) joint Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension has finally come to an end. The new guidelines were officially presented yesterday at the ESC Annual Congress in Barcelona

The 2022 “Clinical Guidelines for the diagnosis and treatment of pulmonary hypertension” by the European Society of Cardiology (ESC) and European Respiratory Society (ERS) Read Post »

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