Cystinosis in the Best of the Web Directory


  • Australian Cystinosis Support Group

    Provides information and support for families and friends living with cystinosis, including medical referrals to doctors specializing in the condition.

  • Cure Cystinosis International Registry

    Explains cystinosis, genetics and genetic testing, carrier status, and care and management. Offers a professional research portal and news about clinical trials.

  • Cystinosis Foundation

    A non-profit organization supporting and educating families and the medical community through the dissemination of educational literature, funding research, and annual conferences. Includes news and resources.

  • Cystinosis Research Network

    Contains information about the CRN, the disorder, community news, conferences, resources, and a newsletter. Based in Illinois. CystinosisCRN

  • eMedicine: Cystinosis

    Offers a clinical article about cystinosis written by Dr. Ewa Elenberg.

  • Genetics Home Reference

    Find in-depth information about cystinosis. Includes the types, a definition, and the genes related to the disorder.

  • UCSD Biochemical Genetics: Cystinosis

    Gives general information and updates. Operates the Cystine Determination Laboratory, an accredited analytical laboratory.

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