Heart Valve Week 2022

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Heart Valve Disease: Working Together to Create a Better Patient Journey

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.

COVID-19

Read the latest advice from the Heart Valve Disease Patient Council on COVID-19.

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Download a valve disease symptoms tracker, developed to help patients / carers.

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Download a valve disease symptoms tracker, developed to help patients / carers.

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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).

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

  • Activated and delivered an International ‘Listen to your Heart’ awareness campaign (September 2020).

  • Responded to the COVID-19 pandemic by developing information resources for use by patient organisations.

  • Participated in a Global ‘Patient to Patient’ #JustGo campaign, encouraging those with cardiac symptoms to seek help despite fears of COVID-19.

  • Launched the first ever patient-led position paper on The Patient Journey in Heart Valve Disease in Europe (December 2020).

  • Held an event on “Heart Valve Disease in Europe: Creating A Better Patient Journey” on 27 April 2022 in Brussels.

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

AEPOVAC
Croi Heart and Stroke Charity Ireland
Mended Hearts

Join the Council:

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Supported by:

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