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 provide patients and clinicians with information about the conditions.
The site is also a gateway to RADAR, the rare disease registry. RADAR is a secure database that holds clinical information on patients with various rare conditions, including cystinosis, with the aim of improving understanding of rare conditions by pooling data.
If you have any ideas as to what information would be useful to patients / relatives or medical professionals, please get in touch with Steven Wise at email@example.com. He would be delighted to hear from you.