Tag: family

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Miles for Moose

Support the first annual Miles for Moose fundraiser.

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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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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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Virtual: Cystinosis Network Europe 2020 International Conference

Following much consideration, Cystinosis Network Europe (CNE) and Cystinosis Ireland have decided to cancel the in-person International Cystinosis Conference...

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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 Family of Great Givers by Cheryl Simoens

The great givers in my life are my family. I was born with a rare kidney disease known within...

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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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