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Cystinosis
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Cystinosis Foundation
Includes brochures, FAQs, medical exchange, research, and a message forum as well as details about the organization and its events, conferences and fund raising.
http://www.cystinosisfoundation.org
Cystinosis Research Network
Information about the organization and their mission. Extensive database about the disease as well as support groups, research and links to other resources.
http://www.cystinosis.org