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!

Become a member!
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About the website contents


All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

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