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Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

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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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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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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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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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My Definition of Cystinosis By Ana Francisco

I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...

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Cystinosis Perspective: RARE Patient Advocacy Summit

Global Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton...

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Ringing in the Future: 2019 Conference Highlights

People from around the world joined the CRN Family Conference this summer to help “Ring in the Future”. Here...

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Global Genes: Rare Patient Advocacy Summit

On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the...

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