Links Page

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Neurofibromatosis (NF-1)
Oppositional Defiance Disorder (ODD)
Parent Support Organizations and Information

 

 

 

 


Neurofibromatosis Links

rose National Neurofibromatosis Foundation, Inc : One of the two national support groups in the U.S. specifically for NF. This one contains links to international NF associations also.

rose Neurofibromatosis, Inc : The other of the two national support groups in the U.S. specifically for NF. I personally prefer this one over the other organization, but both are great.

rose American Academy of Pediatrics Policy Letter: Volume 96, Number 2, Part 1,August, 1995, p 368-372 Health Supervision for Children With Neurofibromatosis (RE9534) : This is a set of guidelines to help the pediatrician care for children with NF. Excellant for parents to know, but contains a lot of physician language.

rose Neurofibromatosis Resources : Carol has worked hard to find information about neurofibromatosis on the Internet, including some personal stories and photographs. This is very much worth surfing into.

rose Neurofibromatosis type 1 (NF1) Research Laboratory : Contains links to some projects being worked on in NF research. Written in doctor's language.

rose International Center for Neurofibromatosis : Hospital in Belgrade that uses laser therapy to treat NF1 patients. Has an excellant photo of an NF patient with multiple fibromas.

rose Homepage for Neuro-Genetic Surgery, Neurosurgical Service, Massachusetts General Hospital, Harvard Medical School : Lots of information, but a little difficult to browse through.

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Oppositional Defiance Disorder Links

rose Structure Cuts Child's Opposition by Jan Lenkowski : This is an excellant article on ODD.

rose Internet Mental Health: Oppositional Defiance Disorder : Contains links to booklets, magazine articles, and other childhood disorders.

rose Oppositional Defiance Disorder : Tons of information, but the tiny font makes it hard to read. Has personal descriptions of children with ODD and various of the other commonly associated disorders.

rose Oppositional Defiance Disorder : This is a personal web page with tons of information and one parent's story.

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Parent Support Links

rose Toll Free Numbers for Health Information : Links to all sorts of organizations: genetics, brain tumors, occupational therapy, etc.

rose National Parent to Parent Support and Information System, Inc : This is a non-profit group that connects parents of children with special needs or rare disorders to other parents of children with the same difficulties.

rose Massachusetts General Hospital Harvard Medical School's NF Resources Page : List of support organizations and internet support groups.

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