Pediatric supports
Helping children with Blau face treatment with less fear.
Simple, practical tools for children with Blau syndrome and the adults around them: a social story for infusions, and handouts that explain Blau to schools, physicians and workplaces.
Social story
A story that prepares a child for an infusion.
This social story was developed for a young child with Blau syndrome experiencing anxiety from infusions.
Social stories are evidence-based visual supports. They often decrease a child’s 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, with less anxiety and stronger coping skills during medical procedures.
To personalize the Google Slides version, choose File, then Make a copy, and add your own photos.
What a social story does
- Increase a child's understanding of an event
- Provide coping tools the child can use
- Highlight reinforcing activities, items or relationships the child can look forward to
Educational resources
People with Blau often look healthy. A handout helps others understand.
It can be tricky to communicate about Blau syndrome with schools, physicians and employers. A one-page flyer or a brochure gives them a brief, clear understanding of the disease.
Email us for the one-page flyer and brochure
We will send both handouts so you can print or share them with your child’s school, doctors or your workplace.
Every dollar, every hour, every voice matters.
Rare disease research only moves when families and supporters push it. Your gift funds research directly, and your story in the registry gives scientists data they cannot get anywhere else.