Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events!

The Alliance for Pulmonary Hypertension has just held the last webinar of the six-part series it launched in June 2023 exploring the innovations outlined in the 2022 joint clinical guidelines on pulmonary hypertension by the European Society of Cardiology (ESC) and the European Respiratory Society (ERS). Across these six insightful sessions, we delved into pivotal […]

Wrapping up a successful year of pulmonary hypertension knowledge-sharing educational live web events! 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 »

Webinar on “Balancing life and health: pulmonary hypertension, women & family planning” (Sept. 5, 2023)

Download the webinar slides here Learning objectives of the webinar Our goal is to empower individuals living with pulmonary hypertension and their families, equipping them with actionable insights and practical knowledge. Transcript “BALANCING LIFE AND HEALTH: PULMONARY HYPERTENSION, WOMEN AND FAMILY PLANNING”, September 5, 2023 NB. This transcript can be translated into your preferred language

Webinar on “Balancing life and health: pulmonary hypertension, women & family planning” (Sept. 5, 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 »

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension

This article was originally published in “Papillon”, the magazine of the Dutch Pulmonary Hypertension Association’s, in the first edition of 2023, at pages 8-9. The author is Anita Harte. We extend our heartfelt thanks to Rob for having shared his journey with us. Rob (39) has familial pulmonary arterial hypertension. He is a member of

Embracing Life: Rob’s Journey with familial pulmonary arterial hypertension 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 »

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

Micheal Garrett 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

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 »

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST

Pregnancy in pulmonary hypertension is a very sensitive and multifaceted topic. Beyond medical considerations, cultural, religious, and personal beliefs play pivotal roles, adding layers of complexity to the decision-making process. Navigating this delicate journey requires a comprehensive understanding of each individual’s unique circumstances and values. Panelists Karen M. Olsson MD – Department of Respiratory Medicine,

Announcing our next webinar on “Balancing life and health: Pulmonary Hypertension, women and family planning”, September 5, 2023 at 18:00 CEST 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 »

A study investigating how intimacy is affected by pulmonary hypertension, initiated by the Board of the Dutch Pulmonary Hypertension Association, was published in “Clinical Research in Cardiology” on April 30, 2023

The aim of this study was to investigate sexual functioning in men and women with pulmonary hypertension. The initiative to undertake this study was taken some years ago by members of the Board of Stichting Pulmonale Hypertensie, the Dutch Pulmonary Hypertension Association, who asked healthcare professionals to address the issue of sexuality in relation to

A study investigating how intimacy is affected by pulmonary hypertension, initiated by the Board of the Dutch Pulmonary Hypertension Association, was published in “Clinical Research in Cardiology” on April 30, 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 »

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association

On the occasion of May 5, the Pulmonary Hypertension Awareness Day, in 2022, HTaPFrance released the French version of a “Pulmonary Hypertension conversation kit” developed by Janssen, as part of the PHuman project , in collaboration with pulmonary hypertension patient associations around the world. The aim is to help patients better understand the condition and

“Inspirer, s’exprimer”, a pulmonary arterial hypertension conversation kit to help patients communicate with doctors and with their loved ones, by HTaPFrance, the French pulmonary hypertension association Read Post »

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