Educational Resources
It can be tricky to communicate about Blau Syndrome with schools, physicians and in the workplace, especially when people with Blau Syndrome may look healthy on the outside. Providing simple literature like the one page handout or brochure can provide a brief and concise understanding. These resources can be downloaded below.
Pediatric Support for Patients with Blau Syndrome
Social Story
This social story was developed for a young child with Blau Syndrome experiencing anxiety from infusions. Social stories are evidence-based visual supports aimed to increase a child's understanding of an event, provide coping tools that can be used, and highlights reinforcing activities items, or relationships a child can encounter as a result of going through a procedure. Social stories often decrease child anxiety and increase helpful behavior during medical treatments.
Please download this tool and insert your child's specific photos and information.
Our hope is that this helps your child's journey experience less anxiety and increase coping skills with medical procedures.