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 Through a lot of research, and a tremendous amount of frustration, came the realization that there was no one place to go for information, updates, or tips for those with rare diseases.  A disease is considered rare when it affects less than 200,000 people at any one given time.  Compounded by the fact that there are over 7,000 diseases considered rare, the struggle is very real for those who suffer or even for those who support someone with a rare disease.   So this begs the question, where can information be found?   As of now, there is a lack of scientific...

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