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Home 2017-08-28T07:59:00+00:00

EVERY PERSON COUNTS

With a disease that is rare and not in the spotlight of the mainstream medicine world, our strongest ally is each other. By using the technology we have, by telling the stories of each other, by finding out what works and what doesn’t can we hope to find a diagnosis and cure.

Share your story.  We are collecting them all and sharing them back out again.

Our Mission
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OUR HOPE

Think Big. Act Bigger.