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Our families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 gene
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Posted by
Marci Scher
What It's Like Having a Child With a Rare Disease by Michelle Haxby from The Mighty
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Posted by
Marci Scher
Rare Disease Day - February 28, 2017
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