A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website

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”. […]

A toolkit offering a very wide range of resources to promote Pulmonary Hypertension Awareness Day 2023, May 5, is now available on the dedicated website Read Post »

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU

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.

The EU is running a public consultation on a “European Disability Card” to make it easier for people with disabilities to access some services while travelling within the EU Read Post »

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant

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

24th edition of the World Transplant Games started on April 15, 2023. An event to demonstrate that health and fitness can be achieved post-transplant Read Post »

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research

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

Launch of the “Patient Engagement Resource Center” (PERC), a platform to promote patient engagement in research Read Post »

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023

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

Interview with Eva Otter, a pulmonary hypertension patient and President of PHA Europe, the European Pulmonary Hypertension Association, April 7, 2023 Read Post »

“The value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023

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 value of learning how to live in the moment with pulmonary hypertension”, by Jen Cueva, Pulmonary Hypertension News, March 29, 2023 Read Post »

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023

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

Understanding more about the role of artificial intelligence in the diagnosis and management of pulmonary hypertension, a video developed by the UK Pulmonary Hypertension Association (PHA UK), March 28, 2023 Read Post »

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023

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

“European Society of Cardiology quality indicators for the care and outcomes of adults with pulmonary arterial hypertension”, European Journal of Heart failure, March 16, 2023 Read Post »

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023

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

Report by Mélanie Gallant-Dewavrin on the French pulmonary hypertension association (HTaPFrance)’s 5th Patient Congress, March 14, 2023 Read Post »

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023

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,

Can self-compassion help us better understand the impact of pulmonary hypertension on those with the condition and their carers? A cross-sectional analysis, Pulmonary Circulation, March 6, 2023 Read Post »

How useful can the new AI “ChatGPT” be in health care? And how trustworthy? Forbes explores its potential uses in healthcare in an article published on March 2, 2023

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

How useful can the new AI “ChatGPT” be in health care? And how trustworthy? Forbes explores its potential uses in healthcare in an article published on March 2, 2023 Read Post »

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023

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

Team PHenomenal Hope launches a new pulmonary hypertension educational website, “Learn Live Breathe PH”, on Rare Disease Day, February 28, 2023 Read Post »

“What’s the Role of Time in Shared Decision Making?”, AMA Journal of Ethics

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 »

European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS (European Organisation for Rare Diseases) Black Pearl Awards celebrates the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives. The black pearl symbolises these unique individuals,

European Rare Disease Organisation, EURORDIS, “Black Pearl” annual awards, including for Best Photo, announced on February 21, 2023 Read Post »

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine

The authors of a study titled “Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare” presents an integrated model to strengthen and sustain patient engagement in health care by drawing on the strengths of both concepts. This includes addressing patients’ skills and capacities, they say, alongside modifications to written

“Health Literacy and Shared Decision-making: Exploring the Relationship to Enable Meaningful Patient Engagement in Healthcare”, Journal of General Internal Medicine Read Post »

phaware global association

phaware® creates PH awareness and global engagement on behalf of families, caregivers and medical professionals and supports innovative pulmonary hypertension research efforts to find a cure for this deadly disease. Address: 1227 N. AVON ST., BURBANK, CA, 91505818.395.3529 Email: INFO@PHAWARE.GLOBAL

phaware global association Read Post »

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