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Announcement from Leadient

To address the shortage of Cystaran eye drops some members of our community may have encountered recently, Leadient Biosciences...

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FDA Approves CYSTADROPS®

Recordati announced approval of an eye drop treatment to reduce corneal crystals. “We are pleased to bring Cystadrops® to...

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Program to Advance Cystinosis Treatment Options

Partnering with RDMD, this program aims to accelerate cystinosis research to ultimately improve treatment options. We welcome you to...

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Second Patient Dosed in Gene Therapy Trial

AVROBIO announces the second patient with cystinosis has been dosed in the company’s AVR-RD-04 investigational gene therapy Phase 1/2...

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New Form of Cystinosis Treatment

Procysbi is now available for U.S. patients with cystinosis in microbead packets. You can find more information along with...

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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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