Telling and Talking

On this new page we want to focus on one of the key elements to confidently raise affected kids: our ability as parents to share information with our sons and daughters as part of day-to-day live.

This page:

  • connects to some valuable external resources,
  • brings together contributions from across the website that focus on telling your child about his/her condition and talking about it. [in progress]
  • and introduces the concept of a visual story, designed to help parents explain a condition to their child, but always placing the child’s personality at the heart of the story.

This page is very much work-in-progress, and we are hoping to produce a lot more information during next year. So check out regularly and do feel free to send us your own stories about how you are sharing information, explaining, preparing etc! (