|Welcome to the Wolfram Syndrome UK Support Group web-site.
My name is Paul Lynch and my wife Tracy and I decided to create this web site after our daughter Jennifer was diagnosed with Wolfram Syndrome in March 2010.
We felt the UK required a web site where families can talk and find information that may be useful.
This site was set up and is monitored by families affected by this rare genetic disorder and our aim is to raise as much awareness of this syndrome as we can.
We feel the more people that know about WS the better and will make sure that hospitals, Doctors and health care professionals are aware of this site.
We've set up a forum to provide contact, support and an exchange of information between families in the UK who are affected with WS. We also aim to arrange an annual meeting for UK families and medical professionals alike,
- this way we can all look out for each other...
|This Friday is ITV's Text Santa - a marathon programme, with big celebrity names - raising millions of pounds for great causes.
Thanks to your donations and fund-raising efforts, over £5 million was raised last year.
Tom Savvides meets Jennifer, a brave
13-year-old, from Worthing, in Sussex, -
supported by nurses from the Wellchild charity.
CLICK FOR THE VIDEO !
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