This list is not to be cited as definitive, complete, recommended, or preferred in any way by NFAA.
 

Australian: The Children's Hospital Westmead
http://www.chw.edu.au/
   
  NF2 Australasian Network
www.home.gil.com.au/~duncans/nf2an/whatis.html
   
  The Association of Genetic Support of Australasia
Facilitates support for those affected directly or indirectly by genetic conditions throughout Australasia
www.agsa-geneticsupport.org.au
   

 

International:
 
An international collection of links/forums/blogs associated with NF
www.neurofibromatosis-network.org
   
  Understanding NF1
A resource from the Harvard Medical School Center for Neurofibromatosis and Allied Disorders.
www.understandingnf1.org
   
  The British Columbia Neurofibromatosis Foundation (Canada)
www.bcnf.bc.ca/
   
 

The Children's Tumor Foundation

Ending Neurofibromatosis Through Research

www.ctf.org

US based foundation focussing on research, public education and patient support.

Largest non-government funding source of NF research.

   
  The Neurofibromatosis Association UK
www.nfauk.org
   
  The NF Society of Ontario (Canada)
An organization made up of volunteers providing support and services to NF families. In addition to assisting individuals and families, the NF Society of Ontario works closely with clinical and research professionals who specialize in the treatment of NF.
www.nfon.ca
   
  The European Federation For Neurofibromatosis Associations
An umbrella organization of national NF patient organizations in Europe
http://nfeurope.nfkontakt.be/DEFAULT-Template/index.html
   
  Neurofibromatosis, Inc (USA)
www.nfinc.org
   
  Neurofibromatosis Resources
http://neurosurgery.mgh.harvard.edu/NFR/
   
Learning difficulties and education:
 
  Children's Hospital Medical Centre
www.cheri.com.au
   
  Learning Links
An Australian charity and non-profit organisation formed to help children who have learning disabilities, difficulties and developmental delays and their families.
www.learninglinks.org.au
   
  Specific Learning Difficulties Association NSW
SPELD NSW is a non-profit-making association of parents and professional persons interested and involved in advancing the education and general well-being of children and adults with Specific Learning Difficulties / learning disability.
www.speldnsw.org.au
   
  Learning Difficulties Online
LD OnLine.org is the world's leading web site on learning disabilities and ADHD, serving more than 200,000 parents, teachers, and other professionals each month.
www.ldonline.org
   
   
More links: The following list is just a few sites amongst the thousands out there, and is not to be regarded as conclusive or necessarily endorsed by the NFAA.
   
  www.geneclinics.org/profiles/nf1/details.html
This is a medical reference site but contains so much information and links that it is really valuable. It contains a long reference list of literature. Last update January 31 2007.
   
  www.neuro.wustl.edu/NEUROMUSCULAR/nanatomy/pntumor.htm#nf1
Another medical site with a summary of the symptoms and effects of different types of tumours.
   
  http://www.emedicine.com/orthoped/topic525.htm
A medical site, by Alvin H Crawford, last updated June 2006, giving a description of NF and suggested treatment.
   
  http://idea.library.drexel.edu/bitstream/1860/268/8/hitelman_thesis.pdf
Thesis on “The Psychological and Functional Outcomes of Treatment for Adolescents with Limb Deficiency Disorders: A Focus on the Family” by Jennifer S Hitelman, 2004.
   
  www.noah-health.org
This is an excellent reference site.

 

 
   

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