About the disease

tissue magnified image

Pulmonary hypertension is a fatal cause of heart failure that affects people of all ages, races and socio-economic groups. Pulmonary hypertension means high blood pressure in the lungs, not in the rest of the body. The blood vessels of the lung become blocked and obliterated, a condition called Pulmonary Vascular Disease (PVD). This disease can occur in anyone. It is seen in newborn babies, people born with holes in the heart, those living at high altitude and it can be caused through many other conditions. It can occur for new apparent reason with devastating consequences. PVD is incurable. Patients become increasingly short of breath and develop severe heart failure.

New medicines help considerably by relieving symptoms and prolonging life, but they do not cure. It is estimated that PVD affects over 60 million people worldwide, but this is an under-estimate as many patients are never diagnosed. 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, not patients! However, all our efforts are aimed at improving the care of patients with PVD and researching into a cure for PVD. Whilst there are effective medicines to relief the symptoms of PVD, there is no cure. So please support us. Every donation is very much appreciated.

yuan-lab_2.jpg

The money you are donating to 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.

floating blue cells

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 over 1,250 active members from 75 different countries, including 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.

Patient Organisations

The PVRI has links with various patient-focused organisations in different parts of the world. If you have been diagnosed with the disease you may wish to access these organisations directly for support.

Pulmonary Hypertension Association (PHA UK)

PHA UK.JPG

The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to people with the rare disease, pulmonary hypertension (PH).

Information provided by PHA, UK:

Set up in 2000, PHA UK has grown to a membership of over 3,500. The PH community is like no other – a unique group of people committed to supporting each other and raising awareness of this serious condition in the hope of one day, finding a cure.

  •          We support PH patients and their families to enjoy a better quality of life
  •          We work closely with healthcare professionals to improve time to diagnosis and treatment
  •          We lobby to ensure PH is on the political agenda
  •          We provide research grants to individuals, hospitals and specialist PH centres to improve the way PH is treated and managed.
  •          We organise our own training and provide educational grants to help healthcare professionals obtain the specialist skills required to treat people with PH
  •          We undertake a wide range of media activity to raise awareness of pulmonary hypertension
  •          We organise events for members with an emphasis on interaction, fun and education
  •          We provide members with an engaging quarterly magazine, encouraging them to share their own PH stories and feel part of a community

As well as supporting people living with PH, we also work to raise awareness of the condition. Pulmonary hypertension can severely affect a patient’s quality of life, but the condition is not widely understood in the UK and can often be mistaken for high blood pressure.

This is where the PHA UK comes in. We are committed to helping raise awareness of the condition among the general public, healthcare professionals, policy makers, funders, and politicians, to help improve the lives of people living with PH.

For more information visit their website HERE

PHA Europe

PHA europe.JPG

Information provided by PHA, Europe:

PHA Europe is the umbrella organization for national associations of patients living with pulmonary hypertension (PH) in Europe. It was founded in Vienna, Austria, in 2003 and is registered as an international non profit organization.

Over the years membership has grown steadily and currently stands at 39 patient associations from 33 countries: Austria, Belgium (2), Bosnia & Herzegovina, Belarus, Bulgaria (2), Czech Republic, Croatia, Denmark, Finland, France, Germany, Greece, Hungary, Israel, Ireland, Italy (2), Latvia, Lithuania, Netherlands, Norway, Poland, Portugal, Republic of Macedonia, Romania, Russia, Serbia, Slovakia, Slovenia, Spain (2), Sweden, Switzerland (2), Ukraine (2), Turkey.

For more information visit their website HERE

Pulmonary Hypertension Association, USA

pulmonary-hypertension-association-header-logo.jpg

Information provided by PHA, USA:

From simple beginnings – four women who met around a kitchen table in Florida in 1991 – the Pulmonary Hypertension Association has evolved into an international community of over 16,000 pulmonary hypertension patients, caregivers, family members and healthcare professionals.

We are now the largest and oldest PH association in the world, and we are changing the history of an illness. In the 25 years since that first meeting, the number of FDA-approved PH treatments has grown from 0 to 14, PHA research programs have been supported by commitments of more than $17 million, and more than two dozen Pulmonary Hypertension Care Centers have completed PHA’s accreditation process.

PHA is a 501(c)(3) nonprofit organization that relies on donations to fund its many programs, including the nation’s largest PH patient and caregiver support group network, lifesaving early diagnosis awareness and education programs, specialty care resources, and research to find ways to prevent and cure PH.

We continue to work every day to end isolation, provide education, involve our constituents in everything we do, and find a cure for pulmonary hypertension.

For more information visit their website HERE

Pulmonary Hypertension Network Australia

PHNA logo.png

Information provided by the PHNA:

Our story began in 2009 with an inaugural meeting in 2010 as a support group for WA. Over the years we have grown to become a support & information network that now covers all of Australia. Meet our  team who are dedicated to working hard to make life better for people living with PH.

The PHNA website was launched in November 2015. Our site and organisation is a community information and support network for Australia. We aim to assist people living with pulmonary hypertension, family, friends, and carers. We have provided information in our website specifically to assist newly diagnosed or long term PH patients, Carers and medical & health professionals, along with other valuable organisations to help you live well with your PH.

For more information visit their website HERE