Editor’s Choice: Rare Adolescence, Rare Parenting and Rare… CEOing

Happy Memorial Day Weekend Patient Worthians!

This week we have an inspiring interview with the CEO and Founder of the Hereditary Neuropathy Foundation. We also have a motivating story on a cheerleader battling Friedreich’s Ataxia.

Not only that, but we have some tips on parenting a child with Smith-Magenis Syndrome and news on a new data sharing product!

We hope you are as excited as we are to check out this week’s Editor’s Choice!




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Cancer Survivor, Chronic Illness Patient, CEO, and Mom: How Allison Balances a Busy Life

PW was lucky enough to talk to Allison T. Moore, Rare Mom, CEO and CMT Warrior.

Check out her story here!

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High School Senior With Friedreich’s Ataxia Fulfills Cheerleading Dream

This girl proves that having a rare disease doesn’t have to limit your aspirations.

Check out her journey here.

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Embracing the Beauty without Sugarcoating the Pain: Parenting a Child with SMS

Parenting itself isn’t easy. Parenting a child with rare disease presents all new challenges.

Check out some tips here.

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monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community

New developments in technology have made their way into the rare disease world!

Check out the details here.

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