Global Heart Hub Heart Valve Disease Patient Council

Heart valve disease is a common, serious, but treatable condition which is particularly associated with ageing. It is the name given to any malfunction or abnormality of one or more of the heart’s four valves, affecting the flow of blood through the heart.

An estimated 1 in 8 people over 75 suffers from moderate to severe heart valve disease. Due to the ageing population, this number is expected to double by 2040 and triple by 2060.

Symptoms of heart valve disease can include chest tightness/pain, shortness of breath, fatigue, irregular heartbeats, fainting and reduced physical activity. However, some heart valve disease patients do not show symptoms or have no symptoms for many years, even if their disease is severe, all of which can make diagnosis difficult.

Detection of heart valve disease involves identifying symptoms and listening to the heart with a stethoscope for a ‘heart murmur’. A murmur does not always mean that there is a problem. Patients with warning signs, like a heart murmur, should be referred to a cardiologist, who will perform additional examinations to confirm the diagnosis. If you are over 65 years old, having a regular stethoscope check could be the first step in the detection of Heart Valve Disease.

Heart Valve Disease: Heart valve disease is common, serious, but treatable.

Awareness Week 2022 #ListenToYourHeart

Symptoms like breathlessness, fatigue and dizziness could be signs of heart valve disease, and sometimes go undetected. Having a regular stethoscope check could be the first step in the detection of heart valve disease.

Our Mission: Healthy and Active Aging

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.

Our Goals:

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 say 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.

Heart Valve Disease Patient Council Priorities:

Run global campaigns to raise awareness of the signs, symptoms and diagnosis of heart valve disease. As a result, elderly people, their health care providers and caregivers will be more aware of heart valve disease and its symptoms and join the campaign.

Raise awareness in general population, caregivers and policymakers so that people over 65 years old around the world, have access to a regular stethoscope check as it could be the first step in the detection of Heart Valve Disease.

Call upon healthcare authorities and policymakers to put in place national heart valve disease guidelines with a clear treatment pathway from diagnosis to treatment which physicians can use as protocol, promoting patient involvement in the shared decision-making.

Build advocacy capacity in patient organisations around the world so they can call upon national healthcare providers to offer wide and equal access to heart valve disease therapies which offer the best and most rapid return to a good quality of life.

Heart Valve Disease: Harnessing Innovation to Save Lives, Mitigate Costs, and Advance the Healthy Aging Agenda

Achievements to date:

  • Launched the position paper Heart Valve Disease: Harnessing Innovation to Save Lives, Mitigate Costs, and Advance the Healthy Aging Agenda. Developed in collaboration with Global Coalition on Aging, the document aims to build a firm base for a policy imperative across the world to tackle HVD given that it is a barrier in active and healthy ageing with huge economic consequences. (March 23, 2023).

  • Organised a roundtable meeting in New York with international key opinion leaders in heart valve disease and aging to discuss and shape strategy for future efforts on Policy Implications for Healthy Aging, Economics, and Innovation (December 7, 2022).

  • Led a reactive global response to the COVID-19 pandemic by developing information resources for use by patient organisations and participating in a global ‘Patient to Patient’ #JustGo campaign, encouraging those with cardiac symptoms to seek help despite fears of COVID-19 (2020 – 2021).
  • Launched the first ever patient-led position paper on The Patient Journey in Heart Valve Disease in Europe (December 2020), which led to a joint seminar on “Heart Valve Disease in Europe: Creating A Better Patient Journey” hosted by Global Heart Hub and MEP Brando Benifei, Co-Chair of the MEP Heart Group in Brussels (27 April 2022) and has been adapted to meet the local needs in eight countries around the world.

  • Expanded the European Heart Valve Disease Awareness Day into successful international HVD awareness campaigns with continued growth in reach each year (third week of September, 2019 – 2022). Read more about the HVD Awareness week 2022 here.

  • Held the first global meeting of the Heart Valve Disease Patient Council in Galway, Ireland (December 2 – 4, 2019).

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

Currently, members of the Heart Valve Disease Patient Council include:

Croi Heart and Stroke Charity Ireland
Mended Hearts

Join the Council:

Ellen Ross from Heart Valve Voice, Canada

Chair, Heart Valve Disease Patient Council

For questions on the Global Heart Hub or how you can join, contact: