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Cystinosis Sessions: October Video Call

Saturday, October 2nd at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. Chat with...

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Cystinosis Sessions: September Video Call

Saturday, September 11th at 4:00pm ET, join the Adult Leadership Advisory Board (ALAB) for a Zoom discussion. TOPICS  The...

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Cystinosis Sessions: January Video Call

All are invited to join as the Adult Leadership Advisory Board hosts our live January video call. This session...

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Live Video Conference: Dependence, Education & Employment

Join the LIVE video conference session on May 2nd!

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Feedback Request: Cystinosis + COVID-19 Survey

How is the COVID-19 pandemic impacting our cystinosis community? A survey was created to help answer this question. The...

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Update: AVROBIO & COVID-19

A letter from Fernanda Copeland, Executive Director, Head Patient Advocacy & Engagement at AVROBIO March 24, 2020 We hope...

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Cystinosis Sessions: Coronavirus, Medication

Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...

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57 Miles for Cystinosis

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