“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 »

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 »

A video by the Pulmonary Hypertension Association UK (PHA UK) explains how “one-pan meals” could be the key to making nutritious food without feeling drained, April 22, 2023

In this video, Chermaine Kwant, a registered dietician who has her own experience of living with pulmonary hypertension and lung transplant, explains how “one-pan meals” could be the key to making nutritious food without feeling drained. Watch the video at this link Iti s possible to activate subtitles in many different languages Disclaimer While every

A video by the Pulmonary Hypertension Association UK (PHA UK) explains how “one-pan meals” could be the key to making nutritious food without feeling drained, April 22, 2023 Read Post »

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU

The European Commission (EC) is working on a proposal for an EU Disability Card, to make it easier for people with disabilities to access some services while travelling within the EU. There is currently no mutual recognition of disability status between the EU Member States. This can cause difficulties for persons with disabilities travelling in the EU.

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU Read Post »

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska

The patient booklet titled “An appetite for life”, developed by the Polish pulmonary hypertension association PHA Polska, contains valuable advice about nutrition for patients with pulmonary hypertension. It also provides tips on how patients can adapt their diet to their condition without sacrificing the pleasure of eating well, and features a number of recipes. It

Patient booklet on nutrition by the Polish pulmonary hypertension association PHA Polska Read Post »

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023

Jen Cueva is both a pulmonary hypertension patient and a nurse by training, which gives her unique insights into the condition and on how it affects day to day life. Writing for the latest edition of Pulmonary Hypertension News, she explains how living in the present moment has done wonders for her well-being. Instead of

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023 Read Post »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

Nonprofit Team PHenomenal Hope launched its new educational website “Learn Live Breathe PH” on Rare Disease Day, February 28, 2023. Written by experts in the field the platform was created to help pulmonary hypertension patients navigate the complexities of living with this chronic illness and feel empowered by relevant, scientific information. The website provides guidance

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

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