Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022

Pulmonary hypertension significantly affects patients’ quality of life. A review of published literature and clinical trials in pulmonary hypertension was conducted by the authors of this study to identify and evaluate patient-reported outcome measures (PROMs) that assess pulmonary hypertension-specific HRQoL for use in clinical studies. To assess treatment benefits and patient experiences, various PROMs were […]

Study on Patient-Reported Outcome Measures for Assessment of Health-Related Quality of Life in Patients With Pulmonary Hypertension, CHEST, November 2022 Read Post »

Aerami Therapeutics prepares for initiation of uniPHied, a Phase 2 study trial of AER-901, inhaled imatinib, in pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD), June 1, 2023

Aerami Therapeutics has announced new additions to its management team as the company prepares for the imminent initiation of the planned “uniPHied” Phase 2 trial of AER-901 (inhaled imatinib), in pulmonary hypertension associated with interstitial lung disease (PH-ILD) and pulmonary arterial hypertension (PAH). AER-901 is a drug-device combination delivered via a high-performance, handheld nebulizer that

Aerami Therapeutics prepares for initiation of uniPHied, a Phase 2 study trial of AER-901, inhaled imatinib, in pulmonary arterial hypertension (PAH) and pulmonary hypertension associated with interstitial lung disease (PH-ILD), June 1, 2023 Read Post »

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023

Eve Glasberg is the Director of Arts and Culture Communications at Columbia University, NY, NY. In a recent article for the Columbia University News, she writes about the growing field of “narrative medicine”, a discipline which is at the intersection of humanities, the arts, clinical practice, and health care justice, and aims to improve clinician-patient

“Narrative Medicine Teaches Doctors How to Listen to Patients’ Stories”, Eve Glasberg, Columbia University News, June 5, 2023 Read Post »

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon

Rita Charon, MD, PhD, is widely recognised as the originator of the field of “Narrative Medicine”. “The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others,” Charon wrote in a 2001 article titled “Narrative Medicine: A Model for Empathy, Reflection,

Narrative medicine: a medicine infused with respect for the narrative dimensions of illness and caregiving, Rita Charon Read Post »

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST

Here are the links to join: If you wish to join all you need to do is go to any of these links at 4.30 pm CEST on June 6. LinkedIn https://www.linkedin.com/events/7062051293736898560/comments/ Facebook Live https://www.facebook.com/events/1015166536534693 YouTube https://www.youtube.com/watch?v=x6wJlY9Kz_o PH-KSP website https://ph-ksp.com/our-webinars/ The recording, slides and transcript will be made available shortly after the webinar. Translations of the transcript will be

The AfPH’s first webinar on Partnering with Patients and Shared Decision-Making in Pulmonary hypertension care is on June 6, 16.30 CEST Read Post »

Key PH Moments You Don’t Want to Miss! May 29- June 4, 2023

Two chronic thromboembolic pulmonary hypertension (CTEPH) patients, Gabriele and Rishabh, from different corners of the globe, respectively Italy and Singapore, have come forward to share their remarkable stories of resilience, strength, and hope. “My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023 “From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of

Key PH Moments You Don’t Want to Miss! May 29- June 4, 2023 Read Post »

ARTISAN Phase 4 study to assess effect of early and rapid treprostinil therapy in mean pulmonary artery pressure (mPAP) reduction and reverse right ventricle remodeling in pulmonary arterial hypertension patients, June 3, 2023

ARTISAN (Afterload Reduction To Improve Right Ventricular Structure And Function) is a Phase 4, Prospective, Multi-center, Single-Arm Study to assess the effect of early and rapid treprostinil therapy to reduce mean pulmonary artery pressure (mPAP, improve right ventricular (RV) function, and reverse RV remodeling, in patients with pulmonary arterial hypertension (PAH). Estimated enrolment is 50

ARTISAN Phase 4 study to assess effect of early and rapid treprostinil therapy in mean pulmonary artery pressure (mPAP) reduction and reverse right ventricle remodeling in pulmonary arterial hypertension patients, June 3, 2023 Read Post »

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023

Author: Pisana Ferrari, May 25, 2023, based on interview Introduction In the past few decades, significant strides have been made in the field of chronic thromboembolic pulmonary hypertension (CTEPH), encompassing enhanced disease comprehension, innovative therapies and surgical advancements. However, living with CTEPH continues to pose physical, practical, emotional, and social challenges for patients, families, and

“From Diagnosis of CTEPH to Triumph: Rishabh’s Journey of Resilience and Restoration”, May 31, 2023 Read Post »

“A call for homogenisation of organ donation practices in Europe”, article in Hospital Health Care Europe, May 18, 2023

The global shortage of organs is a critical challenge that directly impacts survival rates worldwide. The COVID-19 pandemic has exacerbated the existing imbalance between organ supply and demand, leading to a substantial decline in global transplant numbers. In this article, Associate Professor Chloë Ballesté Delpierre from the University of Barcelona Medical School, highlights the importance

“A call for homogenisation of organ donation practices in Europe”, article in Hospital Health Care Europe, May 18, 2023 Read Post »

“My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023

Gabriele, a 47-year-old Italian national residing in Brescia, bravely opens up about his personal journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH), aiming to raise crucial awareness within the pulmonary hypertension community. By sharing his experience, he hopes to shed light on this condition and its impact, offering support and insights to those who may be

“My Journey with Chronic Thromboembolic Pulmonary Hypertension (CTEPH)”, Gabriele Valentini, May 29, 2023 Read Post »

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023

A recent article in Drug Topics, reports on the findings of a study presented at the 2023 American Thoracic Society International Conference, held from May 19 to 24 in Washington, DC, which reveals that the majority of patients with pulmonary arterial hypertension (PAH) live in an area that has a shortage of health care professionals,

Exploring Geographic Barriers to Care Access for Patients With Pulmonary Arterial Hypertension in the US, a study presented at the American Thoracic Society (ATS) Annual Congress, May 19-24, 2023 Read Post »

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat

From left: Monica, 12 years post double lung transplant; Pisana, 21 years; Samantha, 19 years; Meri, 18 years; Alessandro, 20 years; Veronica, 19 years. In the middle stands Erna, a remarkable woman who provided unwavering support to us and our families during our time in Vienna, both before and after our life-changing surgeries. All of

A Reunion of Gratitude and Friendship: Six Long-term Lung Transplant Recipients Reconnect and Celebrate at Countryside Retreat Read Post »

Zambon Pharma completes enrolment in Phase 3 clinical trial evaluating new inhaled treatment for the treatment of Bronchiolitis Obliterans Syndrome (BOS) following single or double lung transplant, May 1, 2023

Zambon, a multinational pharmaceutical company, announced today that it has completed enrollment in its two pivotal Phase 3 studies. The trials are designed to evaluate the safety and efficacy of Liposomal Cyclosporine A for Inhalation (L-CsA-i) for the treatment of BOS in adults following single lung (BOSTON-1) or double lung (BOSTON-2) transplantation.  BOS is a

Zambon Pharma completes enrolment in Phase 3 clinical trial evaluating new inhaled treatment for the treatment of Bronchiolitis Obliterans Syndrome (BOS) following single or double lung transplant, May 1, 2023 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 UK Pulmonary Hypertension Association, PHA UK, has a dedicated page about menopause in pulmonary hypertension and features four patient testimonials

Menopause is something that 50% of the population will experience at some point in their life, but it isn’t talked about enough. The PHA UK takes a closer look at menopause, and how it affects women with pulmonary hypertension. Read more at this link on the PHA UK phocusonlifestyle.org web page Four patients have shared

The UK Pulmonary Hypertension Association, PHA UK, has a dedicated page about menopause in pulmonary hypertension and features four patient testimonials Read Post »

The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network

We are delighted to announce that the Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network, which includes more than 200 respiratory organisations across Europe and beyond, working together with people living with over 40 different lung conditions, including pulmonary hypertension. The European Lung Foundation (ELF)

The Alliance for Pulmonary Hypertension (AfPH) has become a member of the European Lung Foundation (ELF) Patient Organisation Network Read Post »

Currently enrolling: HYPERION Phase 3 clinical trial to evaluate Sotatercept on top of background pulmonary arterial hypertension therapy in newly diagnosed intermediate-and high-risk patients

This is a phase 3, randomized, double-blind, placebo-controlled study to evaluate sotatercept when added to background pulmonary arterial hypertension therapy in newly diagnosed intermediate- or high risk pulmonary arterial hypertension participants. The estimated enrolment is participants is 662 and the estimated completion date is August 31, 2028. The sponsor is Acceleron Pharma, Inc., a wholly-owned

Currently enrolling: HYPERION Phase 3 clinical trial to evaluate Sotatercept on top of background pulmonary arterial hypertension therapy in newly diagnosed intermediate-and high-risk patients Read Post »

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