Links to Disability Organisations and other sites
- Online Mendelian Inheritance in Man: Prader-Willi
Syndrome; PWS -Written for the medical community rather than for families,
this will provide you with a full, factual account of the syndrome and it
contains well over 100 references. Certainly, worth printing out if only
for your G.P.
Found at --
http://www3.ncbi.nlm.nih.gov/htbin-post/Omim/dispmim?176270
- GeneClinics - a very technical paper, written clearly
for medical professionals by Susan Cassidy, who has long been at the
forefront of treatment and research into PWS - heavy emphasis on the
genetics of PWS
Found at -- http://www.geneclinics.org
- Julie's Page - is about growing up with medical
problems, a very friendly site. Its goal is "to help people
understand what it is like from the perspective of children and teens who
are doing just that. These kids have been experts at coping with problems
that most children have never heard of."
Found at --
http://funrsc.fairfield.edu/~jfleitas/contents.html
- Pediatric Database - Six page, point by point summary of PWS
under the headings Epidemiology, Pathogenesis (Historical Background and
Genetic Defect), Clinical Features, Investigations and Management. A cold,
scientific summary but perhaps a useful checklist.
Found at --
http://www.icondata.com/health/pedbase/files/PRADER-W.HTM
- Hunger - Seems to be an individual's page with
some information about PWS and other syndromes and links to the Arizona
site. As a site it confused me but if you persevere and follow the
links there are some real gems to be found.
Found at --
http://www.geocities.com/HotSprings/Spa/2131/hunger.html
- Scoliosis Research Society Information about Scoliosis and how it
is treated with lots of diagrams - general, not specific to PWS
Found at -- http://srs.org/
- Angelman's Syndrome Foundation
- a site to the mirror
image of PWS, as it were - PWS has problems with the paternal 15th
chromosome and Angelman's the maternal 15th chromosome.
Found at -- http://www-chem.ucsd.edu/asf/
The following sites are more general sites related to disability.
- Listserv for
Siblings - a site
dedicated to the support of people with disabled brothers or sisters.
Found at --
http://www.chmc.org/departmt/sibsupp/sibnet.htm
- Carers National
Association - Informs
and supports carers - list local groups and has information about rights
and support as well as breaks from care..
Found at --
http://www.bbc.co.uk/education/carers/week.htm
- Useful Addresses
- Mainly contact addresses
and telephone numbers for benefit agencies etc. Well worth printing out
and keeping.
Found at --
http://www.mparker.demon.co.uk/addresses.html
- Give Hope
- First impressions are
that this is a site for Brain Tumour or Cancer sufferers, but it is far
more, containing details of organisations/support groups/charities under
such topics as Welfare, Information & Support, Wish Granters,
Education & Equipment, and Holiday & Respite Care.
Found at --
http://freespace.virgin.net/give.hope/resource/
- Disability
Solutions - Emphasis on Down's Syndrome but Many General Issues
Addressed.
Found at -- http://www.teleport.com/~dsolns
- Disabled Living Foundation -
Information on suppliers of
equipment for people with disabilities.
Found at -- http://www.atlas.co.uk/dlf/
- Charity and Community Service (Community)
- A page of links to
web sites - there's nothing obviously applicable to PWS but with so many
sites something must be helpful.
Found at --
http://galaxy.einet.net/galaxy/Community/Charity-and-Community-Service.html
- Family
Village - A huge site for disability related matters.
Found at -- http://www.familyvillage.wisc.eduPsts/
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The Prader-Willi Syndrome
Association (UK) - Web page last updated 5th August 2003.
If you have any suggestions to make about this Web site, please let us know
by e-mail
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