Editor’s Choice: When Being a Rare Disease Patient = Being a Fighter

WHEW! That week was short, wasn't it? We hope you had an awesome Independence Day Weekend in the US, and Canada Day in our neighbors to the north. This week,…

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Why Status Epilepticus (SE) Drug Therapy Research is Hot News
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Why Status Epilepticus (SE) Drug Therapy Research is Hot News

Has your healthcare provider ever talked to you about using an FDA-approved drug for an unapproved use (sometimes called an “off-label” use) to treat your disease or medical condition? It…

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Teen with Adrenoleukodystrophy (ALD) Celebrates Milestone Birthday with Wild Animals
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Teen with Adrenoleukodystrophy (ALD) Celebrates Milestone Birthday with Wild Animals

Adrenoleukodystrophy (ALD) is a terrible disease - but tell that to Ethan Jeffcoat, who spent his latest birthday playing with a python, alligator and more! ALD is a brain disorder that destroys…

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SWAT Teams are Stepping in to Help with… Rare Diseases?
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SWAT Teams are Stepping in to Help with… Rare Diseases?

Nope, we're not joking! US SWAT teams (Special Weapons And Tactics, military weapons-equipped law enforcement teams) have been asked to step in to help with backlogged FDA applications to get experimental treatments designated as orphan…

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