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.

Comments are closed.

Jonathan Terry Awarded MBE We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE [...] Read more...
National Cystinosis Study Day at The Priory Rooms, Birmingham NEW VENUE: The event will now be held at The Priory Rooms in Birmingham City Centre. The QE [...] Read more...
Cystinosis Comic Book Series by Artist Kevin McCalla The Cystinosis Research Network in the US has teamed up with Kevin McCalla, a young artist who [...] Read more...
Newsletter – November 2012 Issue 21 of the Foundation newsletter has recently been finalised and is available to download [...] Read more...
All website content copyright Cystinosis Foundation UK (Charity No.1074885) 1997-2013, except where explicitly stated.
Data Protection Act Registration Number: Z9880997. Please refer to our terms and conditions and our privacy policy.
site:bonnyday