Cystinosis Research Network – a guide for parents

The US-based Cystinosis Research Network have just released their Cystinosis Parent Handbook. The handbook, available online at the link below, is a very comprehensive resource for parents of children with cystinosis as well as older patients themselves.

http://www.cystinosis.org/filemanager/Cystinosis-Parent-Handbook-Final.pdf

Note that some of the content is US-specific, particularly the references to specific medications, so any questions in this regard should be directed towards your usual medical team.