Useful resources for patients

Useful associations

Many associations act to support patients and their families on a daily basis, improving their quality of life with medical and paramedical teams. Their main role is to break isolation through a close relationship.

Depending on their specialization, they also contribute to raising awareness, prevention and research.


Selected associations:

Founded in 1964 by two cardiologist researchers and clinicians, Profs. Jean Lenègre and Pierre Soulié, the association has fought for more than 50 years against cardiovascular diseases through four key missions:

  • Develop prevention to raise awareness among the greatest number of French people of the dangers of cardiovascular disease and the means of protecting themselves against it.
  • Fund research and support researchers.
  • Support cardiac patients in specialized structures.
  • Initiate life-saving gestures to save lives.

This national association, with regional branches, leads a daily fight to inform, prevent, support, defend and help against cardiovascular diseases. Every year, it organizes a heart day to raise awareness of risk factors. Local activities are offered for patients.

This association’s mission is to support patients and their loved ones, raise awareness of hereditary heart rhythm disorders and the associated risks, support research projects, support adapted sports practice, bring patients’ voices to stakeholders in the hospital sector and public authorities, as well as to promote first aid training.

The AMOC puts itself at the service of other patients to create a chain of moral support for patients who have undergone surgery or will soon be operated on: it helps them, through their experience, to re-integrate into active life, to compile a file for the COTOREP (Technical Committee for Career Guidance and Reclassification) by supporting them with an associative letter of support, and informs them about the possibility of taking out insurance and borrowing under the AERAS (Loans and Insurance with Increased Health Risk) convention.

This patient association aims to improve the living conditions of children born with a heart defect, cardiomyopathy, or any other problem related to a heart defect from birth – whether operated on or not – to provide moral and psychological support, to facilitate meetings between patients and/or families,  to publicize rights and defend them before the public services.

This patient association represents and defends wearers of defibrillators before public authorities, creates a chain of solidarity between wearers, participates in the operation of patient homes in hospitals and answers questions from wearers of defibrillators and pacemakers on a daily basis.

Created by two twin brothers, both former rugby players, suffering from Brugada disease, this association aims to raise funds to be able to install defibrillators in sports arenas, making them available for athletes but also for the public who frequent these venues.

Since 1976, the Heart and Health Club, created by the French Cardiology Federation and its regional associations, have spread its prevention messages throughout France and promoted the cardiovascular rehabilitation of patients who have had a cardiovascular event. The heart and health clubs intervene to support “phase 3” of cardiovascular rehabilitation.

This association is made up of two organisations: on the one hand the National Federation France AVC and its 50 regional branches, and on the other hand the France AVC Endowment Fund, with several objectives:

  • Ensure mutual assistance between people who have suffered strokes and their families.
  • Represent and promote the actions of the network with public authorities and various partners.
  • Unite the local “FRANCE-AVC” associations by providing them with support to help them create and develop, to promote exchanges at all levels and achieve collective expression.
  • Proceed with the approval of new local “FRANCE-AVC” associations, while ensuring the preservation of the ethics of the network.
  • Establish action programmes, based on strategic reflections relating to the policy of the network and ensure the function of the network.
  • Develop any scientific document intended for sale to local “FRANCE-AVC” associations.

This association was created in 1994. It has the particularity of bringing together, around common projects, doctors, medical executives, patients, parents of patients and businesses… all those who are committed and mobilized to improve the living conditions of people with of a heart defect.

This feature is also a strength. It is this that enables the association to organize actions that best meet the needs of patients. It is also this that enables it to design innovative projects, such as the construction of a reception centre for patients and families on the site of the Haut-Lévêque hospital in Pessac.

This association was created thanks to parents who wanted to do more for their child and take up the cause of heart disease head-on. Also, of course, they wanted to share their experiences with you, families, doctors, researchers, health professionals, fundraisers and volunteers: all those who act to improve the quality of life of people with congenital heart disease and their families.

Made up of patients and representatives of hospital services, the association aims to help, assist and support patients in their fight against heart failure by assisting or supporting newcomers to the disease, by contributing to a better knowledge of this pathology and better and broader consideration of its effects by the public authorities through health policy.

Other useful resources

Find further information on how to live better on a daily basis with a heart rhythm disorder on the following sites: 

Visit the social networks of the Liryc institute or the Hereditary Heart Rhythm Disorder Reference Centre (CMaRy) to follow news and events for patients.

They talk about their heart rhythm disorders

UN MATIN, LE COEUR DE JULIETTE, 14 ANS, S’EST ARRÊTÉ…

Juliette a été victime d’une mort subite cardiaque provoquée par un dysfonctionnement de son coeur. Grâce aux découvertes et aux innovations scientifiques de l’Institut Liryc, elle a pu être sauvée. Ne laissons pas les maladies du rythme cardiaque emporter des vies.

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