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FORUMS > General (Genetics)
Replying to Topic: NF
Created On 2/14/08 12:54 PM by jk


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jk
Junior Supporter

Posts: 1
Joined: Feb 2008

2/14/08 12:54 PM
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I'm new here. I appreciate this networking site - a real help for desperate people.

I didn't find instructions on how to post, so I am entering my post here, please put it where you feel it will get proper coverage and let me know how I can familiarize myself with the workings of this site.

A young child from Spring Valley is suffering with a swollen, bulging eyelid - blocking the vision.
1) We are seeking the most updated info on NF in general. Any new breakthroughs, etc.
2) We are looking to bolster the falling self-confidence by trying to repair the eyelid. Any info would be very greatly appreciated. Especially from anyone with experience.

JK
 
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nrt
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Posts: 1
Joined: Jun 2008

6/11/08 10:19 PM
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I have a child with NF. There are some potentially promising therapies coming online - it really depends on the nature of the glioma/fibroma. I highly recommend getting this kid pronto into the NF program at Children's Hospital of Philadelphia. Check out their page at: http://www.chop.edu/consumer/jsp/division/service.jsp?id=26692
 
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FORUMS > General (Genetics)

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