Heart Failure Patient Council

Heart failure is a serious chronic condition where the heart cannot pump enough blood to support the needs of other organs in the body. The most common causes of heart failure include coronary heart disease, myocardial infarction (heart attack), congenital heart defects, or damaged heart valves.

Symptoms

Symptoms of heart failure include shortness of breath, extreme tiredness or no energy, dry cough, swelling in the ankles or feet, sudden weight gain and rapid heartbeat or palpitations. However, it is estimated that up to 30% of patients living with Heart Failure have no obvious symptoms.

It is estimated that 60 million people worldwide are affected by heart failure, but with the right medication and lifestyle, it can be managed.

Heart Failure Awareness 2025

#HeartFailureAwareness #TheWholeStory

This year’s campaign “Heart Failure and Connected Conditions – The Whole Story” aims to raise global awareness of heart failure, and the critical role connected conditions, such as diabetes, kidney disease, obesity, and high blood pressure, play in its onset, progression, and management.

HF Awareness Campaign 2025

Our Mission: Raising Awareness of Heart Failure

The first patient council to be established by the Global Heart Hub was the Heart Failure Patient Council. This council is an alliance of patient organisations from across the globe, working with heart failure patients and their carers. A priority of the council is to raise awareness of heart failure, promote public and healthcare education and advocate for policy action in an insufficiently recognised and increasingly burdensome disease area.

Our Goals:

The Patient Council is united in the view that heart failure is poorly recognised and not well understood by both the general public and healthcare professionals.

There is global consensus that:

The early signs and symptoms of heart failure are often dismissed as normal ageing and thus overlooked as early presentation of the disease.
There are significant gaps in access to diagnostics in primary care, which result in inequities and delays in diagnosis. Heart failure diagnoses are frequently made late and often the patient has developed acute disease.
There is considerable variation and inequity of access to international best practice and specialist care, including access to heart failure nurse specialists (both in hospital and in the community).
Failure to recognise and treat heart failure appropriately is contributing to high hospital admission and re-admission rates, with consequential economic burden on healthcare systems and a huge impact on patients and carers.

Empower Webinar

Heart Failure & Its Connected Conditions: Understanding Risk & Early Detection

As part of Heart Failure Awareness Month, Global Heart Hub is delighted to partner with Diabetes Initiative Indonesia for this patient-centred webinar on heart failure and its connected conditions. Heart failure is rarely an isolated condition—it is often linked to other health conditions such as diabetes and kidney disease, creating a complex landscape that can be challenging for patients to navigate.

A webinar not to be missed!

This session will provide essential insights into the connections between these conditions, why early detection matters, and how patients can take proactive steps in managing their health.

Achievements to date:

Launched the short, one-page summaries based on the GHH friendly guide “Heart Failure – Your Guide to Your Journey”. Friendly guide summaries are created in a way for people with heart failure and their caregivers to have all key information anytime anywhere, where the main friendly Guide document is for those who seek in-depth information with examples and guidance.
Received the Think Global Awards in the Life Science category for the impact that the International Heart Failure Patient and Caregiver Charter has achieved on a global level. The overall goal of this Charter is to support the development of optimal high-quality care and to promote its adoption internationally across all healthcare systems.
Launched the Heart Failure Guide, based on the European and American guidelines agreed by leading experts in heart failure as well as discussions with representatives of patient groups worldwide. The guide is designed to support individuals who have been newly diagnosed with heart failure, those who are living with the condition, and their caregivers.
Supported 4 localizations of the GHH Heart Failure Patient and Caregiver Charter in 2022 for Australian, USA, Brazilian and Lithuanian, which are endorsed by the national clinical societies.
Launched the International Heart Failure Patient and Caregiver Charter in June, 2022, which was translated into 15 languages and endorsed by over 30 patient organization affiliates from the Global Heart Hub Heart Failure Patient Council.
Activation and execution of the global annual Heart Failure Awareness Campaigns since May 2018. Learn more about the 2023 Heart Failure campaign here
Responded 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). Read more here
Hosting of annual patient organisation capacity building academies. The first academy was held in Galway, Ireland in 2015.
Global Heart Hub Heart Failure Patient Council Lead is a member of the Steering Committee of the Heart Failure Policy Network and actively engages in the activities around the policy by empowering Patient Advocates and Patient Organization Leaders to become a valuable stakeholder.
As part of the collaboration with The Health Policy Partnership, the Heart Failure Council has launched:
- Handbook of Multidisciplinary and Integrated Heart Failure Care (September 2018).
- Heart Failure Country Barometers – Europe (April 2018).
- The European Heart Failure Policy Network Toolkit (September 2015).
- Early Diagnosis patient education booklet (December 2015).
- European written declaration on heart failure campaign (December 2015).