Ogden C.A.R.E.S. – Patient Worthy

Photo courtesy of Lacey Smith

“A Rare Gem”: Savannah’s Story Spreads Ogden Syndrome Awareness (Pt. 1)

Post author:Jessica Lynn
Post published:February 21, 2023
Post category:Cerebral Palsy Eosinophilic Esophagitis Lennox-Gastaut syndrome Ogden Syndrome

Right now, there are approximately 100 people in the world who have been diagnosed with Ogden syndrome, a rare neurodevelopmental disorder. Lacey Smith’s 11-year-old daughter Savannah is part of this…

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.

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