Author: cystinosisrn

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Cystinosis Comic Book Series

This three part series is a one-of-a-kind resource for children AND adults curious about cystinosis. Each installment was carefully...

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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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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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Cystinosis Gene Therapy Clinical Trial Grant Approved

CIRM Board Approves New Clinical Trial for Rare Childhood Disease Original article published on the CIRM website, June 20,...

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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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WBC Kits

A white blood cell (WBC) test helps monitor cystine levels important in managing cystinosis. Information about the test and...

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Canada Approval

Health Canada approved the first cysteamine eye drop solution to help people living with cystinosis. Read more…

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Rare Disease Day

February 28, 2018 Gear up for Rare Disease Day and request your FREE cystinosis ribbon temporary tattoo and start...

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Cystinosis Ireland Seedcorn Funding 2019

The Cystinosis Ireland Seedcorn Funding scheme aims to provide researchers with the opportunity to generate solid preliminary data which...

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