Evelyn Leigh Evelyn Leigh

The Need for Clinical Studies in Rare Disease

Here’s a staggering statistic: only 5 percent of rare diseases have approved treatments. But that doesn’t mean there isn’t extensive work and research being done to find therapies, procedures, and eventually, cures for these conditions.

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Tali Wohlgelernter Tali Wohlgelernter

Tali's Story: Struggling with Epilepsy and Dravet Syndrome

On September 14, 2018 my healthy seven-month-old baby had her first seizure. It was scary. Really, really scary. It was hard to believe that this was really happening to us. After a lot of tests and tears, it became clear that this was not a one-time seizure.

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