Tag: cystinosis

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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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Seed-Balls for Cystinosis

Over the last few years, Carter’s family has taken a strong interest in monarch butterflies. Post diagnosis, Grandmom (Carrie)...

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Invitation: Clinical Trial for Cystinosis Nonsense Mutation

NoMuRiC (Nonsense Mutation Readthrough in Cystinosis) A Phase II Clinical Trial of ELX-02 for Treatment of Cystinosis (McGill University...

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Supporting Families Affected by Nephropathic Cystinosis: DNAcheckup & Dante Lab Partnership

Genetic testing is now being offered to cystinosis families at a discounted rate.  However, you may be wondering, who...

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Cystinosis: A Blessing and a Burden

In order to think of what Cystinosis Awareness Day means to me I had to think about what cystinosis...

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2nd Annual 57 Miles for Cystinosis

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