Tag: experience

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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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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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Strangers Brought Together by Destiny by Sara Healy

What started as a cystinosis awareness effort turns into a life-changing encounter. It all started with Jana (my twin...

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