The recording, slides and full transcript of the AfPH webinar on Patients as Partners and Shared Decision Making now available at this link You can request a translation of the transcript by contacting us via this form Find out more about a very successful French campaign to promote organ donation with young people at this […]
PH News – June 12-18, 2023 Read Post »
This year the HTaPFrance’s Annual General Assembly was held on the 10th of June via video conference, bringing together approximately 45 people. he association operates thanks to two employees and of course volunteers who dedicated 1 093 hours of volunteer work in 2022. These volunteer hours are valued in the accounts and represent €12,339, or 0.7 full-time equivalent. HTaPFrance keeps track of volunteer hours, because
The long-awaited traditional AIPI meeting with patients and their families finally took place on June 11, 2023, marking a joyful reunion for patients and their family members after the challenging period of COVID-19 restrictions. The meeting kicked off with a presentation by the President, Pisana Ferrari, about the various activities and initiatives undertaken by the
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 founders of “My PH Family” believe that educating children and families about pulmonary hypertension in a fun and engaging way can help alleviate some of the anxiety associated with the diagnosis. This is why they have created the Kiki the Koala series which provides easy-to-understand information about the condition and offers advice on living
Take a moment to check out the latest updates in the PH-KSP’s “News” section: 🤝 Recording and slides of the AfPH live webinar on “Partnering with patients and shared decision making in PH care” now available Link 📋 PHA UK launches survey to investigate how patients feel about their clinical data being accessed by researchers
Noteworthy PH Moments: Highlights from June 5 to 11, 2023 Read Post »
We are delighted that around 50 people attended our webinar live across all 3 platforms (LInkedIn, Facebook and YouTube) and that the event has received 100s of views in the following days. We had good engagement from the audience and we are looking forward to the next event! We take the occasion to warmly thank
“AI has the potential to bring about positive changes in healthcare and to empower patients by providing them with more control over their health”, reads an article in the BDJ published on May 26, 2023, which, interestingly, was entirely written by Chat GPT, an AI conversation tool developed by Open AI! Manas Dave and Neil Patel,
“Artificial intelligence in healthcare and education”, BDJ, May 26, 2023 Read Post »
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
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
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
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,
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
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 (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
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
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
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
Last week around 20 entries were posted on the platform, the more topical ones in the “News” section, and those who serve as useful background info in the relevant sections of the PH-KSP. Many thanks to the patient associations and other organisations who shared news about their activities and to our volunteer content creation/curation team.
A selection of the PH-KSP’s Entries from May 22-28, 2023 Read Post »
