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… Cystinosis Research Network – a guide for parents

As part of their “Strategy for Rare Kidney Diseases”, the Renal Association are in the process of developing the rarerenal.org website. The website, which covers a number of rare kidney conditions including cystinosis, aims to… New online resource for rare kidney conditions in the UK