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Study Participants Needed: The Effect of Exercise on Muscle Dysfunction in Cystinosis

Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...

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AVROBIO Cystinosis Focus Group

AVROBIO is looking for perspectives from the cystinosis community. They will be conducting a small focus group to help...

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Cystinosis Sessions: July Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on July 10th at 4pm ET. TOPICS ...

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Cystinosis Sessions: June Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on June 5th at 4pm ET. The...

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Cystinosis Session: May Video Call

The Adult Leadership Advisory Board (ALAB) is hosting a Zoom video call on May 1st at 4pm ET. The...

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Cystinosis Sessions: April Video Call

Cystinosis Sessions: April Video Call All are invited to join as the Adult Leadership Advisory Board hosts a live...

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Cystinosis Sessions: March Video Call

All are invited to join as the Adult Leadership Advisory Board hosts a live video call on Saturday, March...

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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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Open Registration – 2020 Cystinosis Virtual Meetups

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

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Cystinosis Sessions: Mental Health

The forth live video conference hosted by the Adult Leadership Advisory Board (ALAB) will discuss Mental Health, Anxiety, Depression,...

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