Why you should sign up

We are all affected by a rare condition for different reasons; You have it, You are a parent, a sibling, a family member or a friend. Or You care for someone with this condition, You are a doctor, You are a teacher;  we all are curious!

And because we are, we understand the importance of sharing our experiences and knowledge!

You have something to share too, maybe just to let people know you are 'involved' ... But by seeing (reading), talking (writing), learning and sharing again we will make life with this condition more beautiful, that is our dream.

So join one of our communities, it's free and there is no obligation!

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