For families and caregivers
“You are not alone”
Koolen-de Vries syndrome is a rare condition. Children and adults with this syndrome often need extra care and support.
Organising care
As a parent, you therefore deal with many different care providers and organisations. Think of doctors, therapists, school and the municipality. This can sometimes make it difficult to organise all care properly.
Overview and coordination
Because many people are involved in the care of your child, it is not always clear who keeps the overview. It is also sometimes unclear who coordinates care. As parents, you therefore often have to arrange a lot yourself and keep in contact with different professionals. Sometimes it is also unclear who is responsible for certain decisions or who you can turn to with questions.
Transitions
Transitions to a new place can also be difficult. For example when a child goes to primary school, transfers to another school or later goes to day care or adult care. With such a change, parents often have to explain again what your child needs. They also sometimes have to apply for support again.
Applications
In addition, it often takes a lot of time and energy to apply for care, aids or support. There are often many rules and forms.
All these things together can be heavy for parents and the family. It can sometimes be difficult to combine this with work and daily family life.
We are happy to think along
As a foundation we understand that this can sometimes be complicated and heavy. That is why we are ready to support parents. Do you have questions, do you not know where to turn or could you use help with an application? Then you can always contact us. We are happy to think along with you and try to help you as well as possible.