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 »
A two day event organised by the Netherlands Respiratory Society entirely dedicated to pulmonary hypertension, featuring some of the key international medical experts in the field as speakers. In response to the new pulmonary hypertension guidelines published in the Fall of 2022 by the European Society of Cardiology (ESC) and European Respiratory Society (ERS), the
Amsterdam UMC Lung Congress on Pulmonary Hypertension, March 16-17, 2023 Read Post »
The Drug-induced Pulmonary Hypertension Symposium is taking place in hybrid form (virtual and at Stanford University The rationale for this symposium is to leverage subject-matter expertise from international academic centers and Stanford University, engage the broader academic communities, global organizations (World Health Organization, United States Food and Drug Administration, European Medicines Agency), and stake-holders (patients,
The 4th Baltic Pulmonary Hypertension and Circulation Conference took place in Riga, Latvia on April 21, 2023. It provided an opportunity to hear about the latest developments in the treatment of pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension from international experts – Prof. Marcin Kurzyna from Poland and Prof. Olivier Sitbon from France, as well as leading experts
4th Baltic Pulmonary Hypertension and Circulation Conference, April 21, 2023 Read Post »
The main stakeholders in pulmonary hypertension care, a brief summary Author: Pisana Ferrari Last updated December 13, 2024 The following is a concise overview of key stakeholders in the field of pulmonary hypertension care at a European and international level. This list serves as a starting point and will be regularly updated to reflect the
An interesting summary of the key ten take home messages of the ESC/ERS clinical guidelines for the diagnosis and treatment of pulmonary hypertension by six members of the Task Force who developed them (2020-2022). Features a useful infographic. Collaboration with patient associations is recommended in commandment n°10! A pdf version of the article can be
An entire section of the Pulmonary Hypertension Association (PHA) website is dedicated to parenting a child with pulmonary hypertension. It provides invaluable advice and resources on different aspects of pulmonary hypertension child care including: Learn more on the dedicated page of the PHA website at this link
Learn more about a research study of an investigational medication for children ages 2 to <18 with pulmonary arterial hypertension on the SALTO research study website at this link
SALTO Research Study for Children and Adolescents with pulmonary arterial hypertension Read Post »
