Recorded: EIP 2015 ● Language: English ● Duration: 23 minutes Topic: Pediatric Rare Diseases


Speaker: VALERIE HOTZ, Executive Director, Cystinosis Foundation, USA

  Learning Objectives: At the end of the session participants will: (1) understand the symptoms of Nephropathic Cystinosis and their similarity to Diabetes, and the resultant risk of misdiagnosis; (2) understand the importance of collaboration among healthcare professionals, families/patients to care for patient including referral to established Cystinosis patient support group to improve long-term outcomes; and (3) learn how to promote all stakeholders remaining open to hearing one another to improve the care for the patient.