The Wilhelm Foundation works to ensure that all children and young people who have an undiagnosed disease receive a diagnosis. When we talk about diagnosis, we don't mean diagnosis on symptoms such as epilepsy, intellectual disability or ASD.
What we are working to do is for the children to get a causal diagnosis, because only then will the doctors know what makes the child sick.
Wilhelm Foundation's parent support group has a diagnostic project together with Karolinska UDP (Undiagnosed Diseases Program). It is a research project, with the research criteria that children with an intellectual disability and/or a malformation will be investigated with the latest genetic diagnostic methods in the hope of finding what makes the child ill.
We arrange Parent Weekend with lectures where the topics can be e.g. difficult-to-treat epilepsy, the latest in genetics and/or neurology. In the evenings we relax together. The weekends are for parents in the Parent Support Group.
The Wilhelm Foundation's Family Camps are for the whole family. The idea is to break the loneliness and find new friends and be in the company of others where no one wonders or asks strange questions.
The Wilhelm Foundation works actively to improve diagnostic methods and increase accessibility for those with undiagnosed diseases. But also with informing parents how to seek a diagnosis.
We also try to give hope to the parents because even if the first doctor or the tenth cannot say what disease the child has, new diseases are discovered all the time!
If you have a grandchild with an undiagnosed disease, we have a Grandparent Group.
