Information for parents

Children with cystinosis often find it difficult to explain living with cystinosis to another person. This website allows a child to make their own presentation about his or her own life with cystinosis. The information in this presentation is aligned with their peers.

A child creates an account using a password and an email address. It could be fun if an adult helps with this. Then a child chooses which topics fit in his or her own story. These topics together form a presentation. To make the presentation more personal, a child can add their own photos. When the presentation is finished you can download it as a PDF and as a PowerPoint document. The presentation can be used in class or for friends.

It is possible to practice giving a presentation through the hospital. Veronique Hoex is a presentation coach that helps children with cystinosis share their story with confidence. Ask to schedule an appointment with her at the hospital.

Contact E-mail: [email protected]

It may take some time for a session to be scheduled. Therefore, please contact us in time.