Matt Granato, who assumed leadership of the Pulmonary Hypertension Association (PHA) in January 2021, was born and raised in Argentina. He is the third president in the PHA’s 32-year history. Granato, 47, has over two decades of experience working for nonprofit and healthcare associations. Before coming to the PHA, he led the Society for Maternal-Fetal […]
The PVRI survey is addressed at health care professionals to identify gaps and challenges that limit access to quality professional clinical care for patients with pulmonary hypertension. The results will be used to develop action plans to help address local needs, mainly in the education, diagnosis, and treatment of pulmonary vascular diseases. The survey results
The Pulmonary Hypertension Association South Africa (PHA SA) is excited to partner with another organisation – the Jenna Lowe trust – to host a PH Patient Symposium in May for PH month in Cape Town – the very first of its kind so it is historic for the country and community. See below for the
Commentary by Prof. Olaf Mercier, M.D., Ph.D., Thoracic Surgeon, Marie Lannelongue Hospital, France Minimally invasive surgery has shown its value in lung resection surgery by reducing the impact of the surgical procedure and accelerating recovery after the operation. These techniques did not allow for lung transplantation, which is a more risky procedure because the connections
Active Citizenship Network, together with civic and patient organizations from all over Europe, has taken the initiative to organize – every year since 2007 – the European conference dedicated to the celebration of the European Patients’ Rights Day, based on the calendar of EU institutions. Over the years, the European institutions have always shown great
This article, published in Advances in Pulmonary Hypertension, refers to a round table covened to discuss the 2022 joint ERS/ESC guidelines on pulmonary hypertension. The round table was attended by Dr Thenappan Thenappan, University of Minnesota, Minneapolis; Dr Marc Humbert, Université Paris-Saclay, Paris; Dr Vallerie McLaughlin, University of Michigan, Ann Arbor; Dr Hilary DuBrock, Mayo
The Pulmonary Hypertension Awareness Day 2023 toolkit is now available at this link On on May 5 very year since 2012 pulmonary hypertension organisations and groups around the world participate in activities to raise awareness of the disease. Many of the patient associations taking part in the celebrations organise sports events and using the slogan “Get breathless for PH”.
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.
Starting on April 15, 2023, 46 member countries came together to compete in 17 sporting disciplines at the 24th World Transplant Games. This is the first reunion of the community of transplant recipients, living donors, donor families, friends and supporters after four years. For over 40 years, the World Transplant Games have demonstrated that health and fitness
The Patient Engagement Resource Centre (PERC) has selected relevant public resources to help translational researchers understand the basics of patient engagement, and guide them through the different phases of patient engagement: from planning to conducting and evaluating. The platform is addressed to researchers but it is also a practical tool for patients to access and
Eva Otter has been living with pulmonary hypertension for twenty years. She was diagnosed with pulmonary hypertension in 2003. At that time she was a busy medical laboratory manager in Lower Austria and also supported her boss at conferences, with publications etc.In this article Eva shares her patient journey over the past years, how she
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 UK Pulmonary Hypertension Association (PHA UK) asked the community what they wanted to know about how artificial intelligence might affect diagnosis and management of pulmonary hypertension, and then put their questions to Dr Andy Swift, a Cardiothoracic Radiologist working with the Sheffield Pulmonary Vascular Disease Unit. Here is the link to the video
The “European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension” were published on the European Journal of Heart Failure on March16, 2023. The indicators may be used to quantify and improve adherence to guideline-recommended clinical practice and improve patient outcomes. Quoting Gergely Meszaros, pulmonary hypertension patient advocate
HTaPFrance held its 5th Pulmonary Hypertension Patient Conference from March 10-12, 2023, in Valpré-Lyon. The Conference, which takes place every 3 years, was delayed because of the pandemic, and all the participants were therefore delighted to be able to come together again. The strikes in France made it a bit more complicated for some speakers
A study titled “Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis” was recently published on Pulmonary Circulation. It was conducted on adults with pulmonary hypertension (n = 65) and caregivers (n = 29), who completed self-report measures on demographic and clinical factors, anxiety, depression, self-compassion,
Commentary by Pisana Ferrari There is a huge amount of hype at the present moment around “ChatGPT”, a natural language processing model developed by OpenAI. ChatGPT interacts in a conversational way and replies to questions from users by tapping into the gigantic amounts of data, vocabulary and information that has been “fed” into it by
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
In the abstract to this very interesting article titled “What’s the Role of Time in Shared Decision Making?”, the authors point out that while shared decision making (SDM) is a desirable process and outcome of patient-clinician relationships, time is often insufficient and represents a barrier to SDM. The authors explore alternative ways clinicians can think
“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics Read Post »
