1. Department of Neurology Massachusetts General Hospital Boston Massachusetts USA
2. Department of Speech, Language and Swallowing Disorders Massachusetts General Hospital Boston Massachusetts USA
3. Center for Rare Neurological Diseases Massachusetts General Hospital Boston Massachusetts USA
4. Division of Pediatric Nephrology, Department of Pediatrics and Communicable Diseases University of Michigan School of Medicine Ann Arbor Michigan USA
5. Department of Social Work, School of Health Sciences Quinnipiac University Hamden Connecticut USA
6. Cystinosis Adult Care Excellence Initiative Reading Massachusetts USA
7. Center for Rare Neurological Diseases, Department of Neurology Massachusetts General Hospital Boston Massachusetts USA