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Cystinosis Sessions: July Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS ...

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2021 Summer Conference Announcement

The CRN 2021 Family Conference is July 16 – July 18. In response to the COVID-19 pandemic, we’ve decided...

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Shortage Impacting WBC Testing Kits

An announcement from Horizon Therapeutics: With the growing dry ice shortage there has been an increased demand for NanoCool...

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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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COVID-19 Vaccine & Cystinosis: Statement

Members of the CRN’s Medical Advisory Board and Scientific Advisory Board weighed in on their thoughts regarding the COVID-19...

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Cystinosis Face Mask Fundraiser

On Thursday, July 2nd, the CRN announced a face mask fundraiser to help create awareness, bring in donations and...

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57 Miles for Cystinosis

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CNE Moves International Conference Online

On April 25th, a free online conference is being provided by Cystinosis Network Europe (CNE) and Cystinosis Ireland. The...

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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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