“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

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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,

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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

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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 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 »

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 »

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, April 22, 2023

Healthy lifestyle alongside medical treatment is very important in pulmonary hypertension. The aim of the new “Nutrition and PH” section on the PHA UK’s website is to help patients understand more about nutrition. It contains expert advice, videos, details of the PHA UK research in this area, and the page is open for patient questions.

The UK Pulmonary Hypertension Association, PHA UK, launched a nutrition section on its website, April 22, 2023 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 »

“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 »

Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet

This booklet was developed by the Pulmonary Hypertension Association UK (PHA UK) as a guide to treating and managing pulmonary hypertension using drug therapies. Sections include conventional or supportive therapies (including oxygen), and targeted therapies, including those taken orally, intravenously or via a nebuliser. This booklet is regularly reviewed to keep the information as up-to-date

Medication and pulmonary hypertension, a Pulmonary Hypertension Association UK (PHA UK) booklet Read Post »

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