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 »

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free!

Colleen Brunetti started her career as a teacher, but after her pulmonary hypertension diagnosis was forced to leave this field. She began a journey to re-invent herself implementing a holistic lifestyle and went on to become a certified health coach. In her book “Defining the new normal: A guide to becoming more than your diagnosis”

Colleen Brunetti’s book “Defining the new normal: A guide to becoming more than your diagnosis”, now available on Kindle for free! 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 »

“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 UK Pulmonary Hypertension Association, PHA UK, has a dedicated Facebook page for pulmonary hypertension caregivers

A great initiative by the Pulmonary Hypertension Association UK which recognizes the essential role caregivers play in pulmonary hypertension care and provides a supportive environment where they can connect, exchange experiences, and offer each other guidance. 👏 Sign up for at this link on the PHA UK Facebook page

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated Facebook page for pulmonary hypertension caregivers 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 »

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023

This survey, the first of its kind, has been designed to help improve global understandings of how pulmonary hypertension affects the lives of patients and in what ways pulmonary hypertension care needs to be improved. The survey has been written by a multidisciplinary panel of pulmonary hypertension specialists and patient group advocates from the pulmonary

The “Pulmonary Hypertension Global Patient and Carer Survey” (PH GPS) is launched, October 16, 2023 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 »

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023

Advances in Pulmonary Hypertension is the USA Pulmonary Hypertension Association‘s quarterly medical journal, directed by an editorial board of renowned experts with the oversight of PHA’s Scientific Leadership Council. The latest edition, Vol.22, N°2, 2023, features many interesting articles. Topics covered include: Full text of this edition of Advances in Pulmonary Hypertension is available at this link

Interesting articles of “Advances in PH”, including on mental health, the role of caregivers and the use of wearables in pulmonary hypertension, August 21, 2023 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 »

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes!

Michael is a pulmonary hypertension caregiver from Humble in Texas, USA. He is a caregiver for his wife, who is 42, and was diagnosed in December 2017 with pulmonary arterial hypertension. Along with her pulmonary arterial hypertension diagnosis, she was also diagnosed with Lupus. She is on intravenous therapy with Veletri (epoprostenol). Michael started his

Sunday “mixing parties”: a husband’s creative way to prepare his wife’s pulmonary hypertension medications to the beat of their favorite tunes! 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 »

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