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 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 »

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023

The findings of the UK Pulmonary Hypertension Association’s major research into people’s lived experiences of pulmonary hypertension have now been published and you can find them here. The survey was completed 859 times, and the results will underpin the UK Pulmonary Hypertension Association’s charitable activity for the next five years. Disclaimer While every possible effort

Findings from the UK Pulmonary Hypertension Association (PHA UK)’s major research into people’s lived experiences of pulmonary hypertension published, November 30, 2023 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 »

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 »

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022

The authors of the study titled “Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, published in Advances in Pulmonary Hypertension, on March 16, 2022. Parents and caregivers of over 300 patients from a large paediatric pulmonary hypertension center were approached for participation in the survey, which was administered online and on

“Social Media Participation Among Parents and Caregivers of Children With Pulmonary Hypertension”, Advances in Pulmonary Hypertension, March 16, 2022 Read Post »

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories

http://www.phocusonlifestyle.org is the “sister” website to that of the UK Pulmonary Hypertension, PHA UK. It is aimed at patients and peers supporting each other through stories. It also houses written resources covering a very wide range of issues related to living with pulmonary hypertension including:

PHA UK’s “sister” website, phocusonlifestyle.org, is addressed at patients and caregivers and houses a wealth of support resources and pulmonary hypertension patient stories 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 »

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