Educational and every day consequences on rare disorders

Throughout the years, the Family Program and Respite service have given us a unique opportunity to meet a large number of children with rare diseases. We have also seen examples on how big the impact of a disease can be on the child’s every day life, both educationally and socially. Many professionals have also expressed a wish to increase their knowledge on the different diseases, especially on educational and every day aspects.

During family stays we perform systematic observations of the children in our school, pre-school and leisure activities, and the results are put together in a database.

We also collect background data from parents and home schools, eg additional problems, information on how the education is arranged today, special help at school, kind of school, size of class, group

After the stay we submit our observations to the child’s home school or pre-school and in return we get their view as additional information.

Thus we get information from three different sources and put it together into the database.

The collected data on educational consequences is spread to other professionals at various conferences and courses and in our family program to both accompanying professionals and parents.


For further information, please contact Ann-Catrin Röjvik,
anncatrin.rojvik@agrenska.se

 


HM Drottning Silvia är Ågrenskas beskyddare


Agrenska is a NGO in Special Consultative Status with the Economic and Social Council of the United Nations