Tag: treatment

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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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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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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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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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