In recent years, the number of voluntary, nonprofit associations formed by patients, created around the issues of a given disease, has increased. The formation of these associations normally arises from the need to meet, more broadly, some services provided by the national health system and to carry out initiatives for the protection and health and social care.

In many cases, the complexity of the situation has led to a progressive organization of individual associations getting together and forming federations to give more strength to their message – both nationally and internationally – without losing their individual characteristics. In this way, requests for good quality care are becoming stronger and equally available nationwide, as well the dissemination of information about diseases and possibly their prevention or early detection. This also creates favorable conditions for investment in scientific research to improve the knowledge about diseases and to protect the patients and their families.

In fact, the demand by citizens and patients to play an active role in the choices on health, both in the doctor-patient relationship – that is, increasingly moving away from a paternalistic vision of the role of the physician and it is becoming a relationship in which choices are shared – and also in health policy and research, has been growing, for several years [1].

These needs were expressed initially by the movements for the protection of citizens “rights and patients” associations. The first to be created and grow in the last century have been women’s associations involved in the fight against breast cancer in the United States and the movement of the fight against AIDS, a disease with a strong social impact as well as one on health [1].

To these movements “historic” associations over time associations that deal with various diseases all over the world were added. Most often, the objective of these associations is to help their members find solutions to everyday life problems of the disease in pragmatic ways, such as providing technical and psychological support to the patients and their families (and also to society). Nowadays these associations are broadening the range of their influence, by disseminating information on the illnesses (education), by participating in and orienting clinical research, and by influencing health and social policy on the basis of the needs of the patients also through lobbying activities.

It should also be pointed out that the health services at the international level are going through a critical period in terms of financial sustainability, which has been accompanied by the spread of patients’ associations and citizens that make up for welfare services which would be difficult to obtain in the healthcare system and promote awareness-raising initiatives so as the rights and needs of those they represent are respected.

The role of patients’ associations is therefore essential in order to promote and improve the dialogue between doctor and patient, as well as to encourage communication and discussion between the individual patients, in order to clarify the needs and expectations for a better understanding of the developments in the medical and scientific fields, with the ultimate aim of improving the quality of life of these patients and avoid the so-called social selection.

Patients’ associations are a key reference point for those who suffer from a specific disease. They give support and information, represent the point of view of patients, and organize awareness campaigns on issues that affect their lives and those of their families. Some of them are also engaged in promoting research into the causes and potential treatments of specific diseases.

In Italy, among the emergencies of the national healthcare system, there is now the issue of adults with congenital heart disease (ACHD). These people, born with a congenital heart defect, underwent cardiac surgery as soon as they were born or during childhood, have passed the critical stage of adolescence, but are having to deal with a number of health, psychological, and social problems, related to their medical history, as also outlined by the literature [2, 3]

ACHD associations are necessary because, in part they make up for an institutional lack. For example, when it comes to the Italian national health system, not all Italian children with congenital heart disease were operated in their territory of origin, most had to travel long distances to move in specialized centers. When they returned home, even if they were followed by the medical center of reference for many years, in most cases, these children did not find a proper medical support in their city or town of origin in. They grew up, together with their parents, mostly day by day, not knowing how to deal with even the most trivial problems. When they became adults they had no effective recognition of their pathology, and they were not helped to find a job. Compared to their healthy peers, they had a much more difficult life, and they had to solve problems such as studying, work, pregnancy, etc., virtually alone, as also outlined by the qualitative study on life experiences carried out in our country [4].

Being part of an association can help these people, not only to live better because there is the possibility to keep updated to the constant flow of information, the possibility to contact psychologists and medical doctors but also to overcome isolation and in being part of a group that works with common goals, which can serve to make citizens more aware of their rights, not to mention the right to happiness. It has been highlighted in the pertinent literature that this population is interested in receiving long-distance support and also peer-to-peer support [5], and associations are excellent at giving such kind of support.

The Italian GUCH Association (AICCA, Associazione Italiana dei Cardiopatici Congeniti Adulti ONLUS) was founded in 2009 from the desire of people with congenital heart disease to create a support network which acts on different fronts, and it includes people with congenital heart disease, their families, physicians, surgeons, psychologists, and peer counselors, specialized in caring for people with congenital heart disease and their families. In Italy, there are over 100,000 people with congenital heart disease but this pathology is not known at all on a public opinion level. AICCA would like to assist this population and help them to deal with their problems. In fact, the growing number of those who are born with a congenital heart disease and who reach an adult age is creating a situation of medical and psychological emergency.

AICCA is coordinated by young adults born with congenital heart disease: their role is to be the leaders and actors in the projects aimed to help other people with this condition.

In fact, for the first time in Italy, these young adults have taken on this challenge collaborating directly with the health professionals in order to find efficient solutions together and to propose new challenges in scientific research.

The objective is to prevent the manifestation of medical and psychological problems through the thorough knowledge of the main healthcare techniques inherent to the patients’ own condition and pathology.

For AICCA it is important to get to know the problems which are present during adulthood not only to enact help strategies but also to support parents who have a child with congenital heart disease in the different life phases of psychological and physical development of their child.

AICCA proposes to develop whichever activity is necessary or beneficial in order to improve the quality of life of adults born with congenital heart disease and their families, creating moreover a national support network managed by young adults with congenital heart disease.

This network should allow to share similar experiences and advice when it comes to emotional, psychological, and practical issues on all things related to daily life (e.g., insurance, occupation, social services, contraception, sport); at the same time, another one of AICCA’s objectives is to be an important reference point when it comes to the medical point of view filling in the gap there currently is in the Italian healthcare system which necessitates to be further capable of being able to care for people with congenital heart disease, also during their adult life.

Currently, AICCA is present on the national territory with regional branches in Lombardy, Sardinia, Sicily, and Puglia. AICCA is in touch daily with its members in all Italy though the website www.​aicca.​eu and the main social networks (Facebook and Twitter).

To date AICCA is dedicated to the realization of several projects including: