Editor’s Choice: Consequences of Unintentional Exploitation in Rare Disease

Happy Spring Patient Worthians!

This week we have pieces from two rare women, one battling the rare disease pemphigus vulgaris, part of the pemphigus and pemphigoid family. The other is from an amazing mother of a child born with gastroschisis.

Think you know about narcolepsy? We have 6 facts that might surprise you. Lastly, check out how the proposed US budget may affect the NIH.

So sit back and enjoy this week’s Editor’s Choice!




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Are You Unknowingly Exploiting Kids with Rare Disease?

What is Facebook Farming and are you unintentionally contributing to it?

Read this PSA from a rare mom on what you can do to protect our little ones with rare disease.

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6 Things You Might Not Know About Narcolepsy

Narcolepsy is one of the better known rare diseases, as it is depicted in the media… though often at the cost of widespread understanding.

Check out these facts that you probably didn’t know about the rare disease.

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A Pemphigus Vulgaris Advocate’s Plea

Iva suffers from pemphigus vulgaris, a very painful rare disease that manifests itself on the skin.

This is her plea to all Americans regarding rare disease.

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Is NIH Funding in Trouble?

Last week, there was a new US budget proposal with serious NIH implications.

Read more about it here.

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