December 28, 2014
Pennsylvania's children have a new protection thanks to Hannah's Law, named after Hannah Ginion of Bristol Township, who suffered from the rare genetic disorder called Krabbe disease. Hannah passed away on Dec. 28, 2014.
To learn more about Hannah and the new law, watch the short video below.
Hannah's Law requires hospitals to screen newborns for Krabbe and five other similar lysosomal storage disorders at birth and will help improve the quality of life for children diagnosed with rare genetic disorders. The other five lysosomal storage disorders include Fabry, Pompe, Niemann-Pick, Gaucher and Hurler Syndrome.
With no known cure or treatment, early detection is thought to be the best chance of identifying a treatment and prolonging the lives of children stricken with this horrible disease, which is why House Democrats fought for this new law that improves newborn screening standards.
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