Dad Plans to Promote Awareness About Cystinosis, His Daughter’s Rare Disease as Father’s Day Approaches
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Dad Plans to Promote Awareness About Cystinosis, His Daughter’s Rare Disease as Father’s Day Approaches

According to a story from CBS News, Clay Emerson, from New Jersey, is hoping to use Father's Day in order to raise awareness about his three year old daughter's rare…

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Celebrate a Holiday your Kidney will appreciate: World Kidney Month!
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Celebrate a Holiday your Kidney will appreciate: World Kidney Month!

Last week was World Kidney Day! And in fact, the whole month of March is kidney month - so there's no excuse to brush up on some key kidney facts…

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The Cystinosis Research Network is Offering Scholarships to Affected Students
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The Cystinosis Research Network is Offering Scholarships to Affected Students

The Cystinosis Research Network (CRN) is offering scholarships to prospective college students who have been impacted by the condition. The organization offers two different scholarships, one for a student that…

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Editor’s Choice: Powerful Purple Crayons and Supermoms

Welcome to Friday Patient Worthians! This week we have stories on cystinosis and super moms with sickle cell! Additionally, we have a patient story on dystonia and an upcoming event. Lastly, an…

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Editor’s Choice: Donating, Battling and Healing in the Face of Rare Disease

Welcome to Friday Patient Worthians! This week we have a PW Contribution on one woman's battle with Stiff Person's Syndrome. We also have a piece on using fear to serve you in…

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If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation
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If Someone You Love Has Cystinosis, You Know the Importance of Organ Donation

Cystinosis breaks my heart. Why, you may ask? Because it robs children of their childhood. I'll explain in a moment--but first, let me give you a general overview of the disease.…

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