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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