Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026!

The Alliance for Pulmonary Hypertension introduced its 2025 “Patients Empowering Patients” (PEP) program, designed to harness the power of peer-to-peer support, on May 5, 2025, World Pulmonary Hypertension Day. The name “PEP Talks” is a playful nod to the acronym of the “PEP” program, and it embodies the encouraging and motivational spirit of traditional pep […]

Celebrating the Alliance for Pulmonary Hypertension’s first 18 “PEP Talks” since the launch of the program in May 2025, and looking forward to many more in 2026! Read Post »

Efficacy of 10% lidocaine gel for injection site pain associated with treprostinil in the treatment of pulmonary hypertension: a report of four cases, JA Clinical Reports, November 29, 2025

This is a small study but it addresses a very important but often overlooked issue, that of injection site pain for pulmonary arterial hypertension patients being treated with sub-cutaneous treprostinil, which can significantly affect quality of life. The researchers found that topical 10% lidocaine gel provided rapid and effective relief of injection site pain, facilitating

Efficacy of 10% lidocaine gel for injection site pain associated with treprostinil in the treatment of pulmonary hypertension: a report of four cases, JA Clinical Reports, November 29, 2025 Read Post »

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025

A new study presented at the American Thoracic Society 2025 Conference reveals that women with pulmonary arterial hypertension (PAH) rely heavily on family caregivers but face significant gaps in meeting their support needs. Methodology Researchers conducted a 45-minute web-based quantitative survey across multiple countries, targeting women aged 21-50 with pulmonary arterial hypertension. Patient-reported outcome measures

Women with pulmonary arterial hypertension rely heavily on caregivers but face major gaps in meeting their support needs, The American Journal of Managed Care, June 18, 2025 Read Post »

UK-wide study validates the digital version of the emPHasis-10 QOL questionnaire for pulmonary arterial hypertension patients, European Respiratory Journal, May 2025

The emPHasis-10 questionnaire, designed to reflect that lived experience, has long been a trusted tool in both clinics and studies but until now, it was only available on paper. In a new UK-wide study, researchers led by Dr. Joseph Newman and colleagues tested the first digital version of emPHasis-10 using the Atom5™ smartphone app. Their

UK-wide study validates the digital version of the emPHasis-10 QOL questionnaire for pulmonary arterial hypertension patients, European Respiratory Journal, May 2025 Read Post »

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025

A study published in Pulmonary Circulation on April 16, 2025 investigated whether Fitbit wearable devices can provide meaningful clinical information about activity and sleep patterns in pulmonary arterial hypertension (PAH) patients. A total of 110 participants completed the 12-week baseline monitoring period. The cohort was median age 52.7 years (IQR: 40.9–60.5), female predominant (84% female),

Physical Activity, Sleep, and Quality of Life in Pulmonary Arterial Hypertension: Novel Insights From Wearable Devices, Pulmonary Circulation, April 16, 2025 Read Post »

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025

This article by Jen Cueva, a pulmonary hypertension patient, reflects on the challenges of managing setbacks, particularly for those with pulmonary arterial hypertension and other chronic conditions, emphasizing that setbacks are not failures but may represent opportunities to adjust and persevere. It highlights the importance of self-compassion, rest, and leaning on support systems to navigate

How to deal with setbacks when managing pulmonary arterial hypertension, Pulmonary Hypertension News, January 29, 2025 Read Post »

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024

This systematic review, published on the Respiratory Medicine November-December 2024 issue, focuses on identifying and evaluating quality of life (QoL) measurement instruments specifically designed for patients with pulmonary arterial hypertension (PAH): EmPHasis-10, CAMPHOR, PAH SYMPACT, and LPHQ. Using the 2018 COSMIN guidelines, the researchers searched multiple medical databases to assess these instruments’ psychometric properties. While

Appraisal and evaluation of quality of life in pulmonary arterial hypertension instruments: A systematic review, Respiratory Medicine, November/December 2024 Read Post »

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024

A very touching and inspiring article by Jen Cueva was published in a recent edition of Pulmonary Hypertension News. This piece beautifully emphasizes gratitude as a transformative practice, even amid adversity. Jen effectively balances acknowledgment of the hardships of living with PH with a constructive approach to fostering positivity. The actionable advice—such as empathetic listening,

“There are so many things to be thankful for, even with pulmonary hypertension”, Jen Cueva, Pulmonary Hypertension News, November 20, 2024 Read Post »

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 2024

As both a nurse and Chair of the Pulmonary Hypertension Association UK, Dr. Iain Armstrong is passionate about doing the right thing for patients. Compassion, he believes, lies at the heart of nursing and excellence in healthcare. Compassion, derived from the Latin “compassion” meaning “to suffer together,” is a vital strength that enables nurses to

Why compassion in healthcare matters, a blog post by Dr. Iain Armstrong, Chair of the Pulmonary Hypertension Association UK, October 15, 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 »

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 »

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 »

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 »

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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