Info. Resources below


* 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

Always this:

"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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Resource list

The right place

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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