Category Archives: In the News

The Exquisite Choreography of Un- “Acceptable Loss”

Going off-topic. Reflecting on the horror in Colorado. Continue reading

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Are You a Patient or a Consumer?

Are patients consumers? It’s a concerning paradigm, especially for those of us with uncommon diseases. Continue reading

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Raise Your Hand for Rare Diseases Day Feb. 28

Rare Diseases Day, sponsored by the National Organization for Rare Disorders, is Feb. 28, 2011. Visit the Rare Diseases Day website and click the “raise your hand” option. Pharmaceutical company Lundbeck Inc. will donate $1 toward rare disease research. Continue reading

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Why Aren’t They Diagnosing Us?

EosinophilGirl looks at several recent medical journal articles about eosinophilic esophagitis. Continue reading

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Sy’s Story

Hoo-boy. When I run across stories like this one, I sometimes wonder if I have any authority at all to be starting this blog: Rare disease keeps child from eating food (from http://www.cfnews13.com in Florida) That’s reality for a 4-year-old … Continue reading

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