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Podcast: Youth to Adult Transition (part 2)

Youth to Adult Transition Part 2- Q &A Panel with Adults Living with Cystinosis Part two of the youth...

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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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Cystinosis Sessions: Coronavirus, Medication

Join the first video conference session created by the Adult Leadership Advisory Board - Saturday, March 21 at 4pm...

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Podcast: Staying Positive while living with Cystinosis

Welcome to our podcast series – Cystinosis Rare: A Journey into the Unknown. Lead by the Adult Leadership Advisory...

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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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