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Rare Disease Day

I missed National Rare Disease Day, but here is an excellent blog post from Nora's mom.

Nora's Journey Rare Disease Day

When we first received a diagnosis for Emerson, I came across this blog about Nora and contacted her through Facebook, which lead to joining two Facebook "support groups."  I am so grateful for her and both of these groups for being there when we felt all alone, needed advice, or need support.  Many times she writes things that I feel like I was thinking but couldn't put it into the right words.