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Cystinosis Basics: Virtual Meetups

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...

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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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57 Miles for Cystinosis

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2021 Family Conference Location

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...

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Rare Disease Day 2020

How will you honor the “rarest” day of the year? Check out our cystinosis awareness giveaway. Sign up and...

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Little But Fierce

When it comes to Elle and cystinosis, “We continue to take each day dose by dose.” Hear more from...

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Each Year is a Gift by Jenn Loglisci

I do not have one story or just one person I can point out as a #GreatGiver. I am...

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A Tale of Two Kidneys by Jana Healy

The person I’m most grateful for is my sister Jennifer. Six and a half years ago my labs were...

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Giving Tuesday

The CRN is a proud participant in Giving Tuesday – a global movement encouraging people to “do good.” This...

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