The Cystinosis Foundation in the USA has for the last few years run a support forum for those connected and affected by Cystinosis. The forum is free to participate in and only requires that you register with the site and provide your email address.
It gives you the chance to talk to people with similiar backgrounds and find out what is happening around the world with respect to Cystinosis.
If you haven’t looked at this forum before, it’s worth taking a look: Cystinosis Fourm.