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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 from January, 2018
Posted by
Marci Scher
JScreen - Pontocerebellar Hypoplasia Type 1A
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Posted by
Marci Scher
We Are the Sisterhood of Mothers With Medically Fragile Children
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Posted by
Marci Scher
My Message as a Researcher to Anyone With a Rare or Undiagnosed Disease
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Posted by
Marci Scher
I Had My Own Notion of Grief
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