Sydänlapset ja-aikuiset (Finnish Association for the Heart Children and Adults)
Diseases covered:
- Familial Electrical Diseases
- Long QT syndrome
- Catecholaminergic polymorphic ventricular tachycardia
- Familial Cardiomyopathies
- Dilated cardiomyopathy
- Hypertrophic cardiomyopathy
- Restrictive cardiomyopathy
- Congenital Heart Diseases
- tricuspid atresia
- pulmonary stenosis
- pulmonary atresia
- aortic and mitral valves
- VSD
- Fallot
- univentricular heart
- others
- Other
- Grief support
Activities of the organization
Every year approximately 450 children are born with congenital heart defect in Finland. Out of 450, about 300 require surgical operation either immediately after birth or later during their lives. However, there are still certain congenital heart defects, which cannot be cured with either medical or surgical treatments.
The Finnish Association for Heart Children and Adults is a nationwide non-governmental organisation, which seeks to benefit and improve the lives of people with congenital heart defect (CHD) or inherited cardiac conditions, as well as the lives of the family members. The Association was established in 1975.
The central goal for the Association is to ensure the best possible scientific and surgical treatment for people with CHD. Today the association has 16 regional groups, all of which follow the same guiding principles for benefiting their members as the nationwide association does. In addition, the Finnish Association for Heart Children and Adults has 3 nationwide divisions – Synja group (a group for young people with and for adults with CHD), the Heart Angels’ group (a support group for those, who have lost their child due to CHD), and the Long QT group (a group for people with Long QT Syndrome.)
One of the main purposes of the Association is to work on behalf of people with CHD and their families. The association also functions as a link between the patient group and the staff of health care sector. The Finnish Association for Heart Children and Adults is a member organisation of the Finnish Heart Association and has approximately 1 600 members at the moment.
The association organises courses and camps, nationwide events and meetings for heart children and their families as well as the young people and adults with CHD. The association attempts to function as a mouthpiece for the issues regarding people with CHD. It publicises its own member magazine 4 times per year, as well as information brochures, leaflets and other material. Furthermore, the association supports the scientific research and education of medical staff on the issues related to inborn heart defects. The association also arranges teaching for support persons.
More information https://sydanlapsetjaaikuiset.fi/
Contact toimisto@sydanlapsetjaaikuiset.fi