The Swedish Childrens Heart Association
The Childrens Heart Association is for You, who have a child with a congenital heart disease.
The disorder may be serious or uncomplicated. If You are young and You have a heart disease, You are welcome to join the grow´n up section of the Association, ”GUCH”. You could have been operated on or still have your heart disease, in either case You may have use of meeting others of your own age and in the same situation. The Heart-Children’s Association also welcomes You, who just would like to support us with Your membership.

The Childrens Heart Association is a national organisation, working voluntarily to:
* improve the conditions for children and young people with heart diseases and their parents.
* spread knowledge and information about children with heart diseases.
* actively support and help children and young people with heart diseases and their families to get in contact with each other.

People who are or have been in the same situation need each other. We feel safe to know that we can contact and meet one another, especially during hard times. Everywhere in our country, the Childrens Heart Association have so called contact-persons present. These persons have children of their own with heart diseases. When You feel the need to talk to somebody who understands, You can call or meet these parents. They are there for You and are happy to help.
Our organisation also has contact-parents with special experiences in, for example, children with Down’s syndrome, children who have been damaged as they were operated on or children who died from their heart diseases. The contact-parents arrange different meetings, sometimes with physicians, social workers and other guests who can give information and answer questions. Sometimes we just have fun together.

Weekend meetings are arranged for members from all parts of the country. At these meetings, groups of parents with something in common get together. They may have children with particularly serious heart diseases, children who have become handicapped because of an operation which failed or children with Down’s syndrome. Some parents may have children who have died as a cause of heart disease.

In the summer, the Heart-Children’s Association arranges so called family weeks. Here, parents with a special profession participate as leaders. A leader could be eg. a psychologist, a physician, a nurse, a social worker or a psychotherapist. During the week, parents to children with heart diseases have the opportunity to talk about their experiences and problems in groups under professional guidance. Meanwhile, the children are looked after by parents who normally work with youngsters. The family weeks also offer a lot of fun! One family week is located in the warm south. There, the children can play and swim outdoors and the parents have time for good recreation.

The members of ”GUCH” get together at the weekend meetings described above. The youngsters also meet young people with heart disease from the countries Denmark, Finland, Norway and Iceland at a Nordic Youthcamp. Downhill skiing is a popular activity good for young people with heart diseases. Children who are ten years or older may, under the guidance of parents and a nurse, go to special camps without their families.

Brothers and sisters to children with heart diseases may need to meet one another to talk. At the Childrens Heart Association’s yearly conference and at some weekend meetings, we arrange programs especially for brothers and sisters.

Through cooperation with those who professionally work with children with heart diseases, we try to train ourselves and others in various subjects. Courses are also organized to educate preschool-, school- and hospital staff.

Families, who have a child with a heart disease, often face a number of problems in society. In order to actulize these problems and to solve them, we must make our voice heard and existence known. Therefore, we write, call and talk to politicians and hospital management staff.

At the office of the Childrens Heart Association, there are advisors You can call or write to. The advisors are happy to provide You with further information of the contact-persons, the members of the organisation’s committee and those who work in the various groups in the association.

Please visit www.corience.org to read about different heartdiseases and livingsituations (in english).

Welcome – The Swedish Childrens Heart association is here for You!

Hjärtebarnsförbundet
Kungsgatan 84, 11227 STOCKHOLM
SWEDEN

Tel: + 46 8-442 46 50
kansliet@hjartebarn.se

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