The Family Program
A child’s disability affects all members of a family, therefore the Family Program is directed towards the entire family. The Family Program offers a unique opportunity for families to get the most recent knowledge, meet and exchange experiences concerning the same rare disease.
The aim is to increase the family members´ competence about the disease and its consequences. The program is specially designed for each separate diseases and the families join us Monday through Friday. During the stay, the parents are offered a program containing the most recent medical and psychosocial information, information on the consequences of the disorder and on the support offered by society. Lectures and discussions focus on the parents´ own questions. Professionals from the child’s home environment are invited to attend the parental program during two days. To set the program Ågrenska cooperates with national and international professionals, specialized in different fields as well as the parental organisations.
The siblings and the children with the disease are offered a program that suits their needs. A preschool and school schedule is combined with medical information on the disease, discussions on their own experiences and leisure activities.
The Family Program at Ågrenska works as an important complement to the rehabilitation units at home.
International conferences on rare diseases are arranged in combination with the Family Program.