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Hello, I am a new member. I have just learned that my 3 month old

daughter has BPES. That is about all I know. The specialist really

did not say much except I need to get a genetic panel done. There is

no one on either side of our family with this condition and I am in

shock. Any help, info, or advice would be greatly appreciated. I

have an appointment in Boston for a second opinion and an opportunity

to actually ask questions.

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