With the improvement of cardiac diagnostic and cardiac surgery, more and more children with ConHD survived and get a chance to live. The new methods gave many children, who would have not survived otherwise because of their severe heart failure, a chace to live. A new patient group was born and also a new kind of paediatric care developed. This development started in the 1960 and it is still going on.

The great medical progress does not prevent that the diagnosis of ConHD was and still is a big shock for all parents. In the daily routine of a university hospital ward for children with ConHD and for paediatric cardiologists the contact with these patients may be standard procedure, but in public media and the public everyday life, children with ConHD live only on the fringes. Therefore, parents-to-be could have heard from ConHD in general, but they have no real understanding of this issue. They do not know the varieties of the different types of ConHD and have no knowledge about the medical options and abilities they have.

If parents-to-be hear the diagnosis ConHD for their child, they enter into complete unknown territory. The lack of information and experience can generate a lot of fears. Of course the paediatric cardiologists and cardiac surgeons can explain to the parents the concrete heart failure of their child and the next steps they have to do, but these professionals may have some difficulties to understand how the parents feel and often they are not able to dispel these fears.

Therefore, parents in Western Europe started to find national self-help associations in the mid-1970s. The first goal of these associations was to provide information about the different heart failures and the medical procedures that were available at that moment and to exchange experiences. For the first time parents with children with ConHD began to use peer-to-peer support for their work. Wherever possible parents met in small groups and spoke about their experiences, fears and hopes.

Such meetings normally took place at the hospital or nearby. However, this meant that only parents who live nearby the hospital or who have a child in the hospital could take part in these meetings. To include more parents the associations started to work with contact persons for specific regions. The contact persons were parents who volunteered to speak to other parents and share information with them. The contact details of these parents were published in the hospitals and in the newspapers of the associations, so that parents in need of advice could call the contact persons and if necessary they also met personally. Today many parents who look for information use the modern communication platforms such us emails, websites with discussion forums or social media groups. But the old ways of the direct support are still in use.

After the national self-help associations have established an exchange of information and advice, they started to work on a political basis. They tried to improve the medical care for children with ConHD and fought for more acceptance of this disease. As they saw that things in the hospitals changed and the medical care for their children really improved, the associations started to widen their political activities to other fields, like, for example, a better integration of children with ConHD into the school system or for better chances on the job market.

The paediatric cardiologists, were important allies when it comes to political demands and the provision of medical information to back up these demands. They also informed these patient groups about the pertinent medical developments and new therapies. For these reasons, the collaboration between the parent associations and the paediatric cardiologists became tighter and tighter. Representatives of the parent associations visited advanced training courses for paediatric cardiologists and cardiac surgeons to get the newest information and to stay in contact with the doctors.

More and more representatives started to visit even the events of the European societies for paediatric cardiologists and cardiac surgeons. In this way the representatives of different national self-help associations got in touch with each other. The result of this progress was that the first exchange of information between the different countries started and the first common projects were discussed.

During the meeting of the Association of European Paediatric Cardiologists (AEPC) 2006 in Belfast, the delegations from Spain, Sweden, Norway and Germany made the proposal to establish a European umbrella group for the first time named European Congenital Heart Disease Organisation for parents of children with ConHD. All the other national self-help associations, which were present in Belfast, confirmed this proposal and also confirmed the representatives of the four countries to become part of the board.

The first ECHDO meeting was organised by the German Bundesverband Herzkranke Kinder e.V. in Berlin in January 2007. ECHDO was not an official association at that time and it was supported by the German Kompetenznetz Angeborene Herzfehler Association. The leading group presented a draft for a European project. The goal of this project was to establish a European Internet platform, on which research results about ConHD from all over Europe could be published, after editors read the abstracts and made sure they are understandable for parents.

During this first meeting, there was also a discussion about the form of the new European umbrella group. It was discussed whether the association should only be for parents or if it had to include also the associations of the Grown-Up Congenital Heart Disease (GUCH). The discussion did not come to an end in Berlin and so it became the main topic during the second meeting of ECHDO in Bruges, Belgium, in February 2007. At the end of the three days of discussion, the representatives came to the conclusion that ECHDO shall be an umbrella for all patients with ConHD and their parents.

In the years 2008 and 2009, the ECHDO meetings were held in Berlin and Barcelona. During these meetings, which both lasted three days, the delegates discussed different topics. The main concerns were the creation of statutes and by-laws for the new European association, with which the majority of represented associations could live and the developments in the EU-funded Internet platform called Corience, described further on in this chapter.

Finally ECHDO became an official European association during the first official general meeting organised by the Children’s Heart Federation in 2010 in London, with the election of the first board and the last changes on the legal documents, giving rise to the first European association for patients with ConHD and their families.

During the process of developing a European umbrella group, the members of ECHDO have chosen the following mission: