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Global Heart Valve Disease Patient Council

The Heart Valve Disease Patient Council was formed in April 2019 and brings together patient organisations to increase awareness of heart valve disease (HVD) across the world. The Patient Council advocates for improving equality and access to treatment across the globe. In addition, it aims to address the issues of late diagnosis and under treatment of heart valve disease. Furthermore, the Council aims to raise awareness and improve understanding of the disease, with a view to reducing the barriers to positive ageing.

Heart valve disease is caused by either wear, disease or damage of one or more of the heart’s valves, affecting the flow of blood through the heart. The most common symptoms are breathlessness, chest pain, dizziness and fainting. However, if diagnosed and treated early, patients can return to a good quality of life. It is estimated that more than 1 in 8 people over the age of 75 suffer from moderate to severe heart valve disease, yet 3 out of 4 people know little or nothing about the condition. Due to the increase of ageing populations across the world the number of people affected by heart valve disease will keep growing. Studies show that people with serious aortic stenosis, the most common type of heart valve disease in the elderly, have only a 50% chance of surviving for two years with the disease if they are not being treated.

The Patient Council is united in the view that heart valve disease is poorly understood and not well known by the general public. There is global consensus that:

  • Heart valve disease can be detected by a simple stethoscope examination, yet large numbers of individuals says their primary care practitioner rarely or never checks their heart with a stethoscope.

  • Undiagnosed and untreated heart valve disease can lead to heart failure and death. Early diagnosis and treatment is central to positive ageing.

  • Despite significant improvements and rapid technological advances in heart valve disease treatment, the condition does not receive appropriate attention in many national cardiovascular health strategies. There is considerable variation and inequity of access to heart valve disease treatments which provide the best and most rapid return to a good quality of life.

  • Despite international best practice guidelines, there are huge variations, inequities and deficits in the treatment care pathway from diagnosis to treatment across the world.

Achievements to date:

  • Expanded European Heart Valve Disease Awareness Day into a Week, to be held each year during the third week of September.

  • Launch of European Heart Valve Disease Partnership Manifesto – The Power of Positive Ageing – presented at the European Parliament, Brussels (September 4, 2018)

  • Launch of first European Heart Valve Disease Awareness Day (September 8, 2018)

  • International collaboration on national awareness disease days in North America (2016, 2017 and 2018)

Currently, the following organisations are members of the Heart Valve Disease Patient Council: