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. |
