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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Editor’s Choice: CRPS Life, Diagnosis Grief, and Cancer Wars

Happy Friday Patient Worthians! This week we have two awesome contributions. One addresses grieving as a parent of a child with rare disease. Another addresses living with CRPS and other…

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The 2017 Cystinosis Research Network Family Conference is Coming Soon!
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The 2017 Cystinosis Research Network Family Conference is Coming Soon!

The Cystinosis Research Network (CRN) is a non-profit dedicated to supporting individuals and families affected by cystinosis. They are strong advocates for research who simultaneously focus on improving the lives…

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Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood
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Study Outlines Strategies for Cystinosis-Diagnosed Adolescents Transitioning to Adulthood

Maya Doyle of Quinnipiac University and Allison Werner-Lin of the University of Pennsylvania conducted a scientific research study to understand the experience of adults and emerging adults living with cystinosis. There…

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Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

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Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…
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Why Can’t I Take a Day Off from Cystinosis? Ummm, Maybe You Can…

I saw a quote, recently, that resonated with me. It said: "I fight for my health every day, in ways most people don't understand. I'm not lazy. I'M A WARRIOR." Dealing…

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Editor’s Choice: Our Mind is a Drug and the Dangers of Superbugs

Who is excited for another long weekend coming up this Monday?! To kick off your three-day weekend, take a look at these intriguing stories... Researchers have identified a superbug that…

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