Publications & Guides

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This is a collection of some of the most important cystinosis publications and education and treatment guides from around the world. It is not, however, exhaustive. You can search for abstracts and articles with specific topics of interest using PubMedGoogle ScholarNational Library of Medicine, or Springer. As of 2018, there are over 1,440 articles relating to cystinosis. Many articles are free, but others have a cost to download.

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CRN Adult Care Excellence (ACE) Initiative – Results and Recommendations

By Maya Doyle, Shea Hammond, Colleen Hammond, Mack Maxwell, Minnie Sarwal, Serena Scott, Sue Scott, Paula Frye Shal, Susan Thomas

Year: 2016

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Cystinosis – General Brochure

By Cystinosis Research Network

Year:

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Cystinosis – Medical Brochure

By Cystinosis Research Network

Year:

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WBC Cystine Handout – Orphan Europe

By

Year: 2009

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Behavioral Profile of Children with Infantile Nephropathic Cystinosis

By Gustavo Delgado, Amy Schatz, Mark Appelbaum, Doris Trauner

Year: 2005

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Latest Clinical Approaches in the Ocular Management of Cystinosis: A Review of Current Practice and Opinion from the Ophthalmology Cystinosis Forum

By Biswas S, Gaviria M2, Malheiro L, Marques JP, Giordano V, Liang H.

Year: 2018

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