* A rare disease is a disease that affects fewer than 200,000 people (USA)
*A disease or disorder that affects 1 in 2000 (EU)
* 50% of all rare disease affects children
"Nothing about rare disease is simple - not the diagnosis; not the daily care, not the long term"
An emergency room doctor may know the name of your rare disease; but he doesn't know anything about it.
Patients are responsible for their own care. Yes, it's unfair.
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Oh hey. I bet you're wondering, "Information about rare disease" or other things like, "Caregiver advice"
You came to the right place!
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