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 »
A very useful tool to understand “PH-speak” developed by the Pulmonary Hypertension Association (PHA) The PHA Acronym decoder can be found on the dedicated PHA Website at this link
Pulmonary Hypertension (PHA) Acronym Decoder Read Post »
This glossary appears in Pulmonary Hypertension: A Patient’s Survival Guide. It was modified for the web to include links and additional references. The Glossary can be searched on the dedicated page on the PHA Website at this link
The European Medicine’s Agency (EMA) medical terms simplifier contains plain-language descriptions of medical terms commonly used in information about medicines. This resource is continually reviewed and updated internally, and the EMA publishes updates periodically. Check the EMA medical terms simplifier at this link
European Medicine’s Agency (EMA) medical terms simplifier Read Post »
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
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
The Pulmonary Hypertension Association (PHA) offers education programs for patients and caregivers through online learning, regional forums and conferences. See the dedicated page on the PHA website at this link
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
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
Useful information about healthy lifestyle habits including nutrition, exercise and sleep in this article by health reporter for WebMedAmanda Gardner medically reviewed by Neha Pathak, MD The article can be viewed on the WebMD web page at this link
“Living Your Best With Pulmonary Hypertension”, WebMD Read Post »
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
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
“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
The Pulmonary Hypertension Association (PHA) brochure on chronic thromboembolic pulmonary hypertension contains information about diagnosis, treatments and surgical solutions. It can be downloaded from the PHA website at this link
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
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
Demand for organ transplantation is increasing all over the world, but there are not enough organs available to meet the need. This shortage of organs is now the limiting factor in treating many patients with chronic organ failure and has led to high numbers of patients on waiting lists. Sponsored by the European Directorate for
European Day for Organ Donation and Transplantation, October 10, 2023 Read Post »
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 »
The European Respiratory Society (ERS)’s Annual Congress is an event that brings together the world’s respiratory experts to showcase all the latest advances in respiratory medicine and science. Pulmonary vascular diseases are listed among among the congress’ “Priority topics for 2023”, and there will be sessions dedicated to pulmonary hypertension. Learn more about the congress
European Respiratory Society (ERS) Annual Congress 2023, September 9-13, 2023 Read Post »
