Friday, May 20, 2011

Batten disease parents aim at screening

Trying to find patients for clinical trials of rare disease treatments can be tough. But following StemCells Inc.’s abrupt shelving of an early-stage trial in Batten disease, patient advocates and parents of kids afflicted with deadly malady are charged up to ensure it isn’t so difficult anymore.
It’s a backstory that runs from Palo Alto to Jacksonville, Fla. — catching Vacaville, San Diego, Columbus, Ohio, Austin, Texas, Kansas City, Mo., Houston and Santa Fe, N.M., in between — and it says a lot about the power of individuals to make a difference.

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