Family course for children with a rare metabolic disease
Kela provides family courses for children suffering from a rare metabolic disease.
Use the course search to look up when courses are arranged
Use the search term ”aineenvaihduntasairaudet”. Please note, the service is in Finnish and Swedish only.
At the course, the child and the family are provided with support to manage problems in their daily life and help to handle their situation. The aim of the rehabilitation is to promote functional capacity, life management and self-care skills. At the course, the family is also provided with information about the condition from which the child is suffering and about rehabilitation practices and support networks available in their area.
The family course for children with a rare metabolic disease is suitable for children who have been diagnosed with a rare metabolic disease (pituitary gland overproduction or insufficiency, APECED syndrome, Addison’s disease) and who have had necessary examinations by healthcare professionals.
Courses are arranged for the following target groups:
- children in primary school and under school age (aged over 1)
- children in lower secondary school.
Purpose of the course
The aim of the course is to provide comprehensive information and guidance for the child and the family and to help them live a full and meaningful life despite the child’s condition. Rehabilitation is also a way of strengthening the family’s resources and life management skills as well as a means of providing support for the family and its support networks. It also provides opportunities to meet other families who are in a similar situation.
Content of the course and implementation
The rehabilitation is implemented as group rehabilitation taking each child’s and family’s individual goal and need for rehabilitation into consideration.
The course includes group discussions and working in small groups, a variety of activities as well as individual interviews, meetings and discussions with rehabilitation experts.
The rehabilitation is arranged on the service provider’s premises. The course lasts 5 days.
The child’s family accompanies the child throughout the rehabilitation. 1 to 2 adult close relatives and up to 2 siblings participate in the family course. If the number of siblings wishing to participate in the course exceeds this, Kela will contact the service provider in order to decide and agree on practical matters and make sure that there is sufficient room for all. The family can stay overnight at the place of the rehabilitation or travel there from home each day.
Course personnel
The course is implemented by the following experts:
- specialist in pediatrics, pediatric neurology, medical genetics or endocrinology
- registered nurse or public health nurse
- occupational therapist
- physiotherapist.
Depending on the child's individual needs, other rehabilitation professionals and assisting personnel may also take part.