The Dinosaur Trust works closely with Stephanie Barwick, Chief Executive, and the team at The Pulmonary Vascular Research Institute (PVRI). The PVRI is a UK registered charity that facilitates global collaboration among doctors and scientists, who have an interest in pulmonary hypertension (PH) or pulmonary vascular disease (PVD). The PVRI currently has over 6,500 members from 104 different countries.
Its vision is to reduce the global burden of pulmonary vascular disease (PVD) within the next two decades. They aim to achieve this through global collaboration, striving for excellence in clinical care, research and education in PVD.
Current estimates suggest that PH is the 4th most common form of heart disease, affecting around 200 million people across the globe.
The PVRI is working with global health regulators, such as the World Health Organization, the Non-Communicable Disease Alliance, and the World Heart Federation, to measure the global burden of PH and to campaign for better healthcare and drug availability for all PH patients worldwide.
The PVRI and The Dinosaur Trust are completely aligned in the pursuit of finding a cure for PH.
Through its global medical network and stakeholder engagement with the pharma industry and drug regulatory bodies, the PVRI is ideally placed to facilitate new research in drug discovery and development for novel PH treatments and medicines.
The PVRI is foremost an international medical society aimed at PH professionals (doctors and scientists) to stimulate discussions and break-throughs in the disease which lead to new and improved research. Patients are at the heart of everything it does.
The main aims of the PVRI are improving patient care and finding new drugs and treatments for patients who suffer from PH with the vision of one day finding a cure. Of course, it welcomes all patients who want to join the society, but it is not a patient society and is not set-up as a fundraising body.
The Dinosaur Trust was founded through a patient-led initiative to meet this need. Both organisations are focused on advancing research.
The Dinosaur Trust is set up to raise funds, all of which are dedicated to funding research into the disease. The Dinosaur Trust partners with the PVRI to identify the most promising research around the world which could lead to breakthroughs and improve patient outcomes.
Currently, The Dinosaur Trust funds varied PVRI research including a large CRISPR gene-editing project which is being conducted at the University of Giessen in Germany under President Professor Werner Seeger.
We’re also excited to announce that The Dinosaur Trust will also be jointly funding a research project under one of of the PVRI’s leading academic investigators in India. This new project seeks to explore the application of yoga-based exercise in the treatment for patients with PH. This is an extremely interesting project as it will look into the physiology of patients and monitor whether certain biomarkers actually change when patients engage in regular yoga exercise. Validation will not just be obtained from patients’ own feedback on their wellbeing, but by scientific analysis of key physiological processes. More information on the PVRI and the collaborative research can be found at www.pvrinstitute.org. Please also see the Annual Report 2019 which gives an overview of our activities around the world and the projects we are involved in.