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Happy Rare Disease Awareness Day!
Today is Rare Disease Awareness Day. I hope you have learned a bit more about the rare disease of Epidermolysis Bullosa and how it...
Feb 28, 20212 min read


Rare Disease Awareness - Post 6
Other random tidbits and facts about Epidermolysis Bullosa (EB) So far I’ve tried to share some of the major characteristics and...
Feb 27, 20215 min read


Rare Disease Awareness - Post 5
It takes a village. I’m sure you’ve all heard the African proverb that it takes a village to raise a child. I couldn’t agree more. What I...
Feb 26, 20213 min read


Rare Disease Awareness - Day 4
Over the meadow and through the woods, from blisters to wounds we go. If you’ve been following along on our journey this week regarding...
Feb 25, 20213 min read


Rare Disease Awareness - Post 3
Fingernails and toenails goodbye? OH MY! Baby hands and baby feet ....they are the cutest little things, aren’t they? The sheer miniature...
Feb 24, 20212 min read


Rare Disease Awareness - Post 2
Blisters. If we break down the meaning of the 2 words Epidermolysis Bullosa we get epidermis (which is the outermost layer of the skin)...
Feb 23, 20212 min read


Rare Disease Day 2021 is coming!
We are a week out from Rare Disease Day 2021. To continue our efforts to spread advocacy and awareness I’m going to make a post each day...
Feb 22, 20212 min read
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