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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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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