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Cystinosis Basics: Virtual Meetups

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...

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Recordati Announces Availability of CYSTADROPS in the U.S.

Beginning September 15, 2020, Recordati Rare Diseases announced the availability of CYSTADROPS across the United States. CYSTADROPS are a...

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Open Registration – 2020 Cystinosis Virtual Meetups

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

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Cystinosis Sessions: Exercise

The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...

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Cystinosis Sessions: Overcoming Limitations & Goal Setting

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...

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Adults with Cystinosis Lead Video Conference Series

In the third episode of “Cystinosis Sessions,” a live video conference series created by adults living with cystinosis, topics...

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Survey: Impact of COVID-19 + Rare Diseases

The Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Live Video Conference: Dependence, Education & Employment

Join the LIVE video conference session on May 2nd!

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Procysbi Announces Tear-Open Packets

Treatment announcement: Horizon has made tear-open granules packets available. Details available at http://bit.ly/37zXmY

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