Tag: cystinosis

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Live Video Conference: Dependence, Education & Employment

Join the LIVE video conference session on May 2nd!

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57 Miles for Cystinosis

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New Form of Cystinosis Treatment

Procysbi is now available for U.S. patients with cystinosis in microbead packets. You can find more information along with...

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2021 Family Conference Location

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...

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Virtual: Cystinosis Network Europe 2020 International Conference

Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference...

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Podcast: Staying Positive while living with Cystinosis

Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...

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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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Rare Disease Day 2020

How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...

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Little But Fierce

When it comes to Elle and cystinosis, “We continue to take each day dose by dose.” Hear more from...

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Each Year is a Gift by Jenn Loglisci

I do not have one story or just one person I can point out as a #GreatGiver. I am...

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