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May 2021 Cystaran Update

Please click here for the latest updates from Leadiant on the Cystadrops shortage. If you have further questions, please...

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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

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Rare Disease Day 2021

The goal of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on...

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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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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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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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Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

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Cystinosis & Mental Health: Virtual Meetup

Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...

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Cystinosis Sessions: Alternative Therapies, Exercise & Activities

Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on...

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Playback – 2020 International Cystinosis Family Conference 

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

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