New study suggests that QOL measurements add prognostic information and should be used in routine pulmonary arterial hypertension assessment and management, “Pulmonary Circulation”, June 2, 2024

A recent study, conducted at the Hunter-New England pulmonary arterial hypertension (PAH) clinic in Newcastle, Australia, investigated the assessment of patient-reported outcome measures (PROs) and quality of life (QOL) in patients in WHO Group 1, pulmonary arterial hypertension. It aimed to determine if QOL scores, measured using both disease-specific (PAH-SYMPACT©) and general (EQ-5D-5L™) tools, could […]

New study suggests that QOL measurements add prognostic information and should be used in routine pulmonary arterial hypertension assessment and management, “Pulmonary Circulation”, June 2, 2024 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 »

“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 »

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 »

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 »

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump!

IFinding a way for pulmonary hypertension to carry their pump for IV medication in a way that works for them is important. The PHA UK invites patients who have found the “perfect bag”, or maybe even a home made one, to send a photo so they can share it to inspire others. Reply to media@phauk.org

“We want to see your pump bags”: the UK Pulmonary Hypertension Association, PHA UK, invites patients on IV medication to share photos of how they wear their pump! Read Post »

Traveling with pulmonary hypertension: useful advice from the Pulmonary Hypertension Association (PHA)

Don’t let a diagnosis of pulmonary hypertension make you think that your travel days are over! Traveling is still possible with some additional planning. Check out the PHA’s dedicated website section to gain insights on what factors to consider during your travels. The Pulmonary Hypertension Association page includes advice on different forms of travel: Learn

Traveling with pulmonary hypertension: useful advice from the Pulmonary Hypertension Association (PHA) Read Post »

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation”

A recent study published in Pulmonary Circulation demonstrated the effectiveness of a newly developed video e-learning tool in improving nutrition and quality of life for pulmonary arterial hypertension (PAH) patients. Conducted at a single center in Amsterdam, the study found that the use of e-learning modules on nutrition offered a unique opportunity to positively influence

Results of study investigating effects of nutrition and lifestyle interventions in pulmonary arterial hypertension patients published in “Pulmonary circulation” Read Post »

The summer is here, at least in some parts of the globe! Here are some tips for patients on how to cope with high temperatures and exposure to sun

HTaPFrance HTaPFrance has just issued its indications on how to cope with warm weather when you have pulmonary hypertension. It recommends great caution as heat and sun can be dangerous. Read more on the HTaPFrance website at this link PHA The PHA offers supplementary recommendations for effectively managing pulmonary hypertension medication in warm weather conditions.

The summer is here, at least in some parts of the globe! Here are some tips for patients on how to cope with high temperatures and exposure to sun Read Post »

Traveling with pulmonary hypertension: a comprehensive guide developed by the US Pulmonary Hypertension Association, the PHA

Planning a trip can be an exciting experience, but for patients dealing with pulmonary hypertension additional considerations and precautions are necessary. The PHA website offers a dedicated web page specifically designed to provide valuable advice for patients who wish to travel. On this dedicated web page, patients can find a wealth of helpful information, tips,

Traveling with pulmonary hypertension: a comprehensive guide developed by the US Pulmonary Hypertension Association, the PHA Read Post »

A credit-card sized guide to pulmonary hypertension developed by the UK Pulmonary Hypertension Association, PHA UK

Small enough to fit in your back pocket, this credit-card sized guide is a handy tool to carry around and give people to read about pulmonary hypertension, its impact on people’s lives and the aims of the PHA UK. Check this resource out on the PHA UK website at this link

A credit-card sized guide to pulmonary hypertension developed by the UK Pulmonary Hypertension Association, PHA UK Read Post »

Driving with pulmonary hypertension, a resource developed by the UK Pulmonary Hypertension Association, PHA UK

The aim of this publication is to guide people affected by pulmonary hypertension through the process of notifying the Driver and Vehicle Licensing Agency, DVLA, of their condition, answer some of the most common questions, and help patients understand what to expect along the way. Click here to order the booklet from the PHA UK

Driving with pulmonary hypertension, a resource developed by the UK Pulmonary Hypertension Association, PHA UK Read Post »

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media

We were drawn to some posts shared by the ANHP on LinkedIn to send positive messages to patients. It features: – Concise, engaging, and encouraging messages– Appealing, evocative, and fun visuals We have taken four of the posts as examples and here are the messages: We are going slow but we are moving forward (turtle)

The Asociación Nacional de Hipertension Pulmónar, ANHP, is sharing engaging and uplifting posts daily on social media Read Post »

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association

Coline, a 34-year-old French pulmonary arterial hypertension patient living in Paris, diagnosed seven years ago, shares her tips on how to “style” a pump for intravenous infusion and on how to talk about it to one’s colleagues. The video is available at this link on the YouTube channel of HTaPFrance.

French patient shares helpful tips on how to “wear” a pump for IV infusion in a way that is discreet and how to talk about it to one’s colleagues, a video shared by HTaPFrance, the French Pulmonary Hypertension Association Read Post »

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension

PHA UK’s is the first survey ever conducted about pulmonary hypertension and nutrition in the UK. As part of PHA UK’s work to help people enjoy a better quality of life with pulmonary hypertension, they would like to explore more about the role of nutrition and the difference it can make in this disease area.

Final call for the UK Pulmonary Hypertension Association (PHA UK), survey to understand more about nutrition and pulmonary hypertension Read Post »

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible

On 13 April 2023 the Asociación Nacional de Hipertensión Pulmonar, Spanish pulmonary hypertesion association, hosted a webinar titled “Pulmonary hypertension and nutrition: can diet help in the treatment of PH?”, featuring as speaker Ms Marina Sisso, a dietician and clinical nutritionist at the Hospital Clínic de Barcelona, specialised in the area of Pulmonology and Cardiology.

The recording of the recent informative webinar on pulmonary hypertension and nutrition, organized by the ANHP (Asociación Nacional de Hipertensión Pulmonar), is now accessible Read Post »

The UK’s Pulmonary Hypertension Association, PHA UK, offers an e-support service to patients, family members and caregivers

As not everyone is comfortable talking on the phone the PHA UK has set up an e-support online service to assist with emotional wellbeing, practical queries and problem-solving, signposting and connections. Contact the PHA UK at support@phauk.org

The UK’s Pulmonary Hypertension Association, PHA UK, offers an e-support service to patients, family members and caregivers Read Post »

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