Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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eddoran 04/24/2009

Anyone have any ideas on how to apply for reasearch for NF-1. I've tried two hospitals
one in Boston the other in Los Angles, and i have
not heard back from either.

Are their any other support groupes for adults
? Most anything I find are for children? Thanks for any Help.

Eddie

deleted_user 04/24/2009

Just keep on contacting them until they respond... there's nothing you can do until they contact you back so keep trying.

eddoran 04/24/2009

thanks

Taqueme 04/24/2009

If you go to ctf.org there is a research link.
They list all the places doing reseach. Most are not in my neck of the woods (ohio) SO I haven't really tried. That shouldn't stop you though.

eddoran 04/24/2009

thanks Taqueme

deleted_user 05/02/2009

If you want support you can always go to the NF chat room, Many people there love to help, they may know of links....http: //www.ctf.org/chat/

eddoran 05/02/2009

thanks

eddie

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