“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

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The Pulmonary Hypertension Association, PHA, is accepting applications for its new grant to support junior pulmonary hypertension researchers. Applications are due March 20, 2023

This research award grants up to $65,000 for one year and supports junior pulmonary hypertension scientists. Proposals must be pulmonary hypertension related research projects that have been favourably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary

The Pulmonary Hypertension Association, PHA, is accepting applications for its new grant to support junior pulmonary hypertension researchers. Applications are due March 20, 2023 Read Post »

EURORDIS, European Rare Disease Organisation, Guide on patient involvement in the development of clinical practice guidelines and consensus statements

EURORDIS, the European Rare Disease Organisation, has published a short guide to explain in simple and practical terms how to involve patients and patient representatives in the development of clinical practice guidelines and consensus statements. You may download the guide from the EURORDIS website at this link 

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Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment

The aim of the SPHERe study is to test the clinical and cost-effectiveness of a supervised exercise rehabilitation intervention with psychosocial support compared to best practice usual care for people with pulmonary hypertension in the community/outpatient setting. The SPHERe study is the first multi-centre clinical randomised controlled trial (RCT) to assess the clinical and cost

Supervised pulmonary hypertension exercise rehabilitation (SPHERe) clinical trial recruitment Read Post »

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023

This Phase 1 study evaluated efficacy/safety of inhaled single-dose MK-5475, an investigational, small-molecule stimulator of soluble guanylate cyclase designed for inhaled delivery via a dry-powder inhaler device, in participants with pulmonary arterial hypertension. The findings reveal that treatment with inhaled single-dose MK-5475 reduced pulmonary vascular resistance and increased pulmonary blood volume. Compared to the placebo, MK-5475 was

Effects of an inhaled soluble guanylate cyclase (sGC) stimulator MK-5475 in pulmonary arterial hypertension (PAH), in Respiratory Medicine, January 2023 Read Post »

The “International Team Development” is a Team PHenomenal Hope program to raise awareness of pulmonary hypertension through endurance racing events

The International Team Development program is a model that enables Team PHenomenal Hope to raise awareness of pulmonary hypertension through endurance racing events throughout the world. The aim of the program is to improve access to care and medications for pulmonary hypertension patients, raise money for medical research into improved treatments or a cure and

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“Impact of Pulmonary Arterial Hypertension on Employment, Work Productivity, and Quality of Life – Results of a Cross-Sectional Multi-Center Study”, Frontiers in Psychiatry

Data on burden of pulmonary arterial hypertension are mostly limited to physical and clinical endpoints as well as quality of life, and research on employment, work productivity, and educational background is scarce, say the authors of this article for “Frontiers in Psychiatry”. The aim of this study was to assess the impact of pulmonary arterial

“Impact of Pulmonary Arterial Hypertension on Employment, Work Productivity, and Quality of Life – Results of a Cross-Sectional Multi-Center Study”, Frontiers in Psychiatry Read Post »

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals

“Participatory Medicine” is a movement in which patients and health professionals actively collaborate and encourage one another as full partners in healthcare. The Society for Participatory Medicine is a not-for-profit organisation devoted to promoting the practice of participatory medicine, which enables collaborative communication and information sharing among patients, caregivers, and healthcare professionals. The Manifesto of

Manifesto of the “Society for Participatory Medicine”, a non profit organisation promoting information sharing among patients, caregivers, and healthcare professionals Read Post »

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy

The European Patients’ Forum (EPF), has recently launched a training course for young patient advocates, “Advocacy 101”. The EPF is an umbrella organisation of patient organisations across Europe and across disease-areas. “Advocacy 101” is a free-of-charge, tailored training course built to help gain a solid base of knowledge and understanding of patient advocacy. Some of the key questions

The European Patients’ Forum (EPF) “Advocacy 101” offers a tailored training course to help build a solid base of knowledge and understanding of patient advocacy Read Post »

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research

In this interesting article titled “Patient Design: The Importance of Including Patients in Designing Health Care”, the authors describe the paradigm shift that has taken place with the rise of internet from the traditional view of medicine, where doctors had little idea what the patient’s problem really was and “only doctors could know what was

“Patient Design: The Importance of Including Patients in Designing Health Care”, Journal of Medical Internet Research Read Post »

European Society for Organ Transplant (ESOT) Annual Congress 2023, September 17-20, 2023

The European Society for Organ Transplant (ESOT) Annual Congress is the most influential and major event of its kind and the largest gathering of the transplant community in Europe, bringing clinicians, surgeons, physicians, nurses, scientists, researchers and patients to review latest developments in transplantation.  For the first time ever a patient/patient advocate has been included

European Society for Organ Transplant (ESOT) Annual Congress 2023, September 17-20, 2023 Read Post »

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