Tag: cystinosis

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Cystinosis Sessions: Exercise

The Cystinosis Sessions live video series continues on Saturday, August 1st from 12:00pm – 1:30pm ET. The Adult Leadership...

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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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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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Cystinosis Sessions: Overcoming Limitations & Goal Setting

The third live video conference takes place June 6 at 12:00 pm ET. The Adult Leadership Advisory Board (adults...

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Adults with Cystinosis Lead Video Conference Series

In the third episode of “Cystinosis Sessions,” a live video conference series created by adults living with cystinosis, topics...

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Survey: Impact of COVID-19 + Rare Diseases

The Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...

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Summary Findings: Cognitive Function in Cystinosis

With critical support from CRN, Drs. Foxe, Molholm, and Francisco from the Cognitive Neurophysiology Laboratory (CNL) in New York...

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Advocating For Our Daughter’s Rare Disease

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

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Cystinosis Awareness Day – 3rd Annual

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

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Podcast Discussion: Coping with Loss & Grief

Tune into the ALAB's Podcast series as we discuss how to cope with loss and grief.

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