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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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Showing posts with the label awareness
Posted by
Marci Scher
If You're Rare, Here's What I Want You To Remember On This Rare Disease Day
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Posted by
Marci Scher
Pushy Parents
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