Discussions By Condition: Congenital conditions

Patients with Alkaptonuria?

Posted In: Congenital conditions 0 Replies
  • Posted By: Anonymous
  • May 20, 2010
  • 00:25 PM

I'm hosting a fundraiser that will donate money to the Alkaptonuria Society, and I know about the disease but I was hoping that I could have a direct conversation with a few patients with Alkaptonuria. I would like to learn from someone who has had a first hand experience, to learn how a normal day is, and I have a few questions. I think that this would greatly increase the depth of my fundraiser, and give it more meaning. If anyone would be willing to do this, it would be greatly greatlyyy appreciated. I know it's a really rare disease, but I figured I'd take my chances on heree. My email is susiemasecar@yahoo.com if anyone is willing. Thank you so muchh!!

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