Excellent educational resources about remote care and use of digital tools by the European Lung Foundation

The European Lung Foundation educational resources about remote care and the use of digital tools include text and videos covering: 🔹 Video calls for consultations🔹 Sharing photos or videos🔹 Virtual wards and home monitoring🔹 Online rehabilitation and activity sessions🔹 Online diaries, journals or questionnaires🔹 Online questionnaires🔹 Wearable devices🔹 Health apps🔹 Benefits of digital healthcare technologies […]

Excellent educational resources about remote care and use of digital tools by the European Lung Foundation 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 »

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association

AIPI, the Italian Pulmonary Hypertension Association, has just released a new booklet in Italian on pulmonary arterial hypertension, featuring a series of questions and answers, interwoven with images. Accompanying the booklet is a glossary of frequently used terms. The booklet aims to provide patients, family members and carers with concise and easy-to-understand information about pulmonary

A brief guide to pulmonary arterial hypertension, in FAQ format, just released by AIPI, Italian Pulmonary Hypertension Association Read Post »

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient”

Salvador Calderón, a patient affected by Pulmonary Hypertension and a volunteer with the Foundation against Pulmonary Hypertension in Spain, has released his third book, titled “The Expert and Informed Patient.” This compelling narrative portrays the journey of a patient through all stages of pulmonary hypertension, highlighting the constant struggle to improve the quality of life

The Fundación Contra la Hipertensión Pulmonar, Spain, shares an important resource with the PH-KSP, a new book by a pulmonary arterial hypertension patient titled “The Expert and Informed Patient” 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 »

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada

PHA Canada has developed a “Wellness Wheel”, a tool that can help patients to identify the things that you need to do to stay balanced in these critical areas of life: mental, emotional, physical, environmental, spiritual, recreational and social. This personal assessment tool will allow patients to reflect on each of these areas of their

Emotional wellness handbook for pulmonary hypertension patients, developed by the Pulmonary Hypertension Association Canada, PHA Canada 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 »

“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 »

Tips for every day life with pulmonary hypertension by AIPI, Italian pulmonary hypertension association

This booklet developed by by AIPI, Italian pulmonary hypertension association, contains pratical advice and tips for day-to-day life with pulmonary arterial hypertension. It stresses the importance of being organised and reserving one’s energies on what really matters. The condition has an impact on many aspects of life and relationships, so it is important to involve

Tips for every day life with pulmonary hypertension by AIPI, Italian pulmonary hypertension association Read Post »

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