Editor’s Choice: Listening to Rare Disease Patient Stories


Something we believe is that the stories of rare disease patients are vitally important. This week, we’re highlighting two articles written by patients, as well as a story about how listening to patients improves a company’s outcome. We also have an article discussing why African Americans with kidney disease are put at a disadvantage.



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I Don’t Have to Like the “New Me?”: A Transient Global Amnesia Story




Getting diagnosed with a rare condition means a lot of change– and it’s okay to not like that. [/one_half_last] [one_half]


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The Impact Stress and Emotions Have on our Health






PW contributor and dystonia patient Tom Seaman is back! This week, he explains how stress can actually impact our physical health.
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Standard Chronic Kidney Disease Tests are Not Precise for African Americans and We Need to do Better






CKD tests don’t serve all kidney patients equally, and the health of black patients is jeopardized because of it.
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Shocking News: Listening to the Rare Disease Patient Can Improve Outcomes





Wow– listening to patients can help with outcomes! Who say THIS one coming?

Do you have a rare disease experience of your own? Share with us here.

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