Cystinosis Overview

Bone Complications of Cystinosis

Craig B. Langman, MD

Ophthalmology Cystinosis Forum

Rachel J. Bishop, Katharina Hohenfellner, Hong Liang

Ocular Complications of Infantile Nephropathic Cystinosis

Rachel Bishop, MD, MPH

Endocrine Complications of Cystinosis

Elena Levtchenko, MD ,PhD

Neurocognitive Complications of Cystinosis

Doris Trauner, MD

Myopathy and Less Frequent Complications of Cystinosis

Jess G. Thoene, MD

Pulmonary Complications of Cystinosis

Richard H. Simon, MD

Introduction to "Extra-Renal Complications of Cystinosis"

Jess G. Thoene, MD

Conclusions to the Supplement, "Extra-Renal Complications of Cystinosis"

Jess G. Thoene, MD

KDIGO Cystinosis Conference Report


Oxygen Use for Individuals with Cystinosis with Severe Muscle Weakness


Cystinosis Transition Management Tool


Cystinosis Parent Handbook Final


Cystinosis: the evolution of a treatable disease

Galina Nesterova, and William A. Gahl

2002 New England Journal of Medicine: Cystinosis

Dr. William Gahl, Dr. Jess Thoene, and Dr. Jerry Schneider

The history of cystinosis lessons for clinical management

Dr. Paul Goodyer, Department of Pediatrics, McGill University

Consensus Statement

NIH/Office of Rare Diseases Conference on Cystinosis (Jan2005); Kleta, Kaskel, Dohil, Goodyer, Guay-Woodford, Harms, Ingelfinger, Koch, Langman, Leonard, Mannon, Sarwol, Schneider, Skovby, Sonies, Thoene, Trauner, Gahl

Infantile Nephropathic Cystinosis - Standards of Care

NIH/Office of Rare Diseases Conference on Cystinosis (Jun2012); Nesterova, Gahl

CRN Transitioning Guide

CRN Adult Care Excellence Initiative (Jul 2011); Nesterova, Gahl, Doyle, Friend, Greeley, C Hammond, S Hammond, Jondle, Krummnacker, P Woodward, T Woodward

Cystinosis research network - a patient advocacy group

Expert Opinion on Orphan Drugs (2013) J Morales

Nephropathic cystinosis: an international consensus document

Francesco Emma , Galina Nesterova , Craig Langman , Antoine Labbé, Stephanie Cherqui , Paul Goodyer , Mirian C. Janssen , Marcella Greco , Rezan Topaloglu , Ewa Elenberg, Ranjan Dohil, Doris Trauner, Corinne Antignac, Pierre Cochat, Frederick Kaskel, Aude Servais, Elke Wühl, Patrick Niaudet, William Van’t Hoff, William Gahl and Elena Levtchenko


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