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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When Balancing Treatment and Side Effects Feels Like Walking a Tightrope
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When Balancing Treatment and Side Effects Feels Like Walking a Tightrope

Life is a balancing act. We need to balance our responsibilities with our desires. We need to balance work lives with personal lives. Our balancing acts aren’t as dire as…

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Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You
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Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You

Having a difficult time finding resources on Friedreich's ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky. You’ve got…

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