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New 01st November 2007 - UK Self Help Groups  This site has a good directory of self help groups in the UK.

New 27th October 2007    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.

www.direct.gov.uk   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.

www.intute.ac.uk   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.

www.epilepsy.org.uk   This is a good website for Information about Epilepsy.

www.mowatwilson.org    This is a website with good information, links, forum, community page & discussion area.

www.cafamily.org.uk    This site has numerous links to other medical conditions/disabilities, as well as Mowat-Wilson Syndrome. 

www.makingcontact.org   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      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 hire-purchase schemes.

Gut 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.

Clinical and mutational spectrum of Mowat Wilson Syndrome    Institute of Human Genetics, Friedrich-Alexander University Erlangen-Nuremberg, erlangen, germany.

patient uk  This site offers a lot of information about medical conditions and support groups as well as medicines and many more good resources.

www.makaton.org/resources/activities_special.htm   This website has some good Makaton Resources.

www.imogendyson.co.uk   This is a New website about a young girl from Lancashire who has survived from a DIAPHRAGMATIC HERNIA.

 
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