What is pulmonary hypertension?
Pulmonary hypertension means high blood pressure in the lungs. This condition leads to pulmonary vascular disease (PVD), the progressive obstruction of the lung blood vessels, which results in increasing shortness of breath and severe heart failure. This disease is incurable and often fatal. It can affect people of all ages, races and socio-economics groups, can be seen in babies born with a hole in their heart and those living at high altitude. It can also develop for no apparent reason in otherwise healthy people with devastating consequences.
New medicines help considerably by relieving symptoms and prolonging life, but there is no cure. It is estimated that PVD affects over 70 million people worldwide, although this is an under-estimate as many patients are never diagnosed. Current estimates suggest that around 200 million people in the world suffer from PVD. Delay in diagnosis and even failure to make the diagnosis is common in both the developed and developing world. The PVRI is a membership organisation specifically aimed at scientists and physicians who have an interest in PH and PVD, not patients. However, all our efforts are aimed at improving the care of patients with PVD and researching into a cure for PVD.
Any money raised for the PVRI will go directly towards two main purposes – education and research. Education is aimed at raising awareness of PVD throughout the world by educating doctors to better diagnose and manage the disease, so that patients can receive proper treatment as quickly as possible. Early accurate diagnosis is key to survival. It can often take up to 18-24 months for a patient to be accurately diagnosed by which time the disease has often advanced to a very serious stage and only little can be done to help. However, with accurate diagnosis within the first six months from onset of the disease, PVD can be managed and patients can receive vital medicines to help them. The PVRI runs large scientific meetings all over the world as well as Master Classes to educate doctors on how to diagnose and manage PVD in their patients. We have developed a comprehensive, interactive e-learning course on PVD, The PVRI Digital Clinic, which is aimed at specialist who wish to enhance their knowledge on diagnosis and management of PH in their patients. The full course, of 12 patient cases, was launched in Lima, Peru 2020 and will is available to all paid members.
Research is aimed at facilitating new drug development and eventually finding a cure to treat PVD. We work closely with the pharmaceutical industry and drug regulatory bodies to develop new medicines. We have an ongoing collaboration with The Dinosaur Trust, a UK charity founded by a patient's father, who supports specific research targeted at the genetically inherited form of PVD. Our network spreads to over 6,300 PH professionals in 103 different countries. Our members include the most senior researchers in the field. We believe that our passion in PVD and our worldwide network makes it possible for our members to conduct basic, clinical and translational research at a level that no single individual or academic institution could accomplish.