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Tag: cystinosis

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Miles for Moose

Support the first annual Miles for Moose fundraiser.

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Cystinosis Awareness Day – 2021

Check back. Details to be announced soon.

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Now Available: CYSTARAN Town Hall Recording

On February 3, 2021, Leadiant and the Cystinosis Research Network held a Town Hall to address the CYSTARAN eye...

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New Cystinosis Gene Therapy Data from AVROBIO

AVROBIO Announces 100% Kidney Substrate Reduction at 12 Months Post-Gene Therapy in...

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Research Results: Community-led Grip Strength Study

Thanks in part to volunteers at both the 2017 and 2019 CRN Family Conferences, this study was able to...

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Mental Health Survey from Children’s Friend Inc.

Children’s Friend Inc. is studying the experiences in and barriers to accessing mental health services for families. For the...

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COVID-19 Vaccine & Cystinosis: Statement

Members of the CRN’s Medical Advisory Board and Scientific Advisory Board weighed in on their thoughts regarding the COVID-19...

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CRN + PCs for People Offer Free Computers, Internet Access

Now more than ever, our world relies on technology to stay connected. The Cystinosis Research Network (CRN) has partnered...

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Cystinosis Sessions:

Saturday, December 5th at 12:00 pm ET, the Adult Leadership Advisory Board (ALAB) will host a live video conference....

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AVROBIO: Cystinosis Gene Therapy Update Functional & Clinical Improvements Reported

November 17, 2020 – AVROBIO announced that data suggests functional and clinical improvements for the first cystinosis patient at...

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See what’s going on in the cystinosis community.

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