New 01st November 2007 -
UK Self Help Groups This site has a good directory of self help groups
in the UK.
amelias corner Our company is
named after our Daughter Amelia who was born in 2004. In 2006 she was diagnosed
with a rare genetic condition called Mowat-Wilson Syndrome. The effects of this
condition in Amelia's case range from severe global developmental delay,
Epilepsy, sleep disorder, a heart condition which was successfully operated on
in 2005 and disorder of the bowel.
Following on from concerns raised by Ministers, the disability lobby and
customers about the difficulties with the current and previous forms, the form
for people aged 16 years and over has been redesigned. The new form is designed
to be easier to complete, with a tick-box format for some questions and new
questions to help get better information. The layout and order of questions has
been changed and language made easier to understand.
Intute is a free online service providing you with access to the very best
Web resources for education and research, selected and evaluated by a
network of subject specialists. The service is brought to you by a
consortium of UK universities and partners.
This is a good website
for Information about Epilepsy.
This is a website with good information,
links, forum, community page & discussion area.
This site has numerous links to other
medical conditions/disabilities, as well as Mowat-Wilson Syndrome.
Also the above website has a
new feature, which is similar to Friends Reunited, but is for medical
conditions/disabilities. You have to sign up and register, it cost £5.00
per year, then as other
members join they can contact you.
Motability is a charity that
helps disabled people to become mobile by making a wide range of cars,
scooters and powered wheelchairs available through contract-hire and
Motility Disorder The
Gut Motility Disorders (GMD) Support Group offers telephone support and
information to families who have children affected by a gut motility
disorder including Hirschprung's Disease, Intestinal Neuronal
Dysplasia, Hollow Visceral Myopathy and Gastro-oespohogeal reflux.
and mutational spectrum of Mowat Wilson Syndrome
Institute of Human
Genetics, Friedrich-Alexander University Erlangen-Nuremberg, erlangen,
This site offers a
lot of information about medical conditions and support groups as well as
medicines and many more good resources.
This website has some good Makaton Resources.
This is a New website about a young girl from Lancashire who has survived from a