Costello Polska is a Facebook group that was started by parents for parents and family members who are looking for support, be it for simple questions or more complex issues. We have 19 members so far.
Costello Syndrome is rare in Poland. We have counted around 12 individuals with this condition. Because of that, support is very important for us.
Our aim is to get more information and other parents' experiences on available treatments, medication, therapies and anything related to the syndrome so we can get the best care for our children, especially because even medical professionals are sometimes baffled by our children.
The group is a very helpful tool for our Costello families.