Tag: rare disease

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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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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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My Definition of Cystinosis By Ana Francisco

I first heard of cystinosis in 2016. It was Spring, I felt. Or it should have been—life metamorphoses are...

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I Am Not My Disease by Steve Schleuder

Life with a chronic disease can be stressful to say the least. My most frustrating moments are when I’m...

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Who We Love by Ina Gardener

They say sometimes it takes a village to help raise children, for us that village included two beautiful women....

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A Cystinosis Journey by Gail Potts

My daughter, Deanna Lynn, was diagnosed with cystinosis 46 years ago in Houston, TX.  At that time I did...

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Cystinosis Perspective: RARE Patient Advocacy Summit

Global Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton...

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Ringing in the Future: 2019 Conference Highlights

People from around the world joined the CRN Family Conference this summer to help “Ring in the Future”. Here...

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Global Genes: Rare Patient Advocacy Summit

On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the...

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