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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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Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

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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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Giving Tuesday

The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...

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I Am Not My Disease by Steve Schleuder

Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...

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A Cystinosis Journey by Gail Potts

My daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX.  At that time I did...

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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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