The cystinosis support groups can put you in contact with other people or families that have cystinosis. Support groups for cystinosis include the Cystinosis Research Foundation, Cystinosis Research Network, the Cystinosis Foundation, and Cystinosis Foundation UK.
There are also online communities for rare disorders such as [link url="www.bensfriends.org/” target=”_blank”>Ben’s Friends, RareConnect, RareShare, or Inspire, which allow individuals and parents to share experiences and advice about dealing with rare disorders.
