Recent event:

 AGSD-UK Annual Conference,
Nottingham,
28-29 October 2017.

 

On-line support for GSD Type III

Facebook group for GSD III Cori Disease

There are now over 150 members of this group from all around the world, although largely from English speaking areas such as UK, North America and Australasia. There is a lively list of posts which you can follow, comment on, or post your own. Remember that these people are mainly not medical professionals but have the disease themselves or have an affected family member. This can be very helpful in swapping experiences. However, take care not to treat someone's opinion as scientific or medical fact. Type "Glycogen Storage Disease Type III" into Facebook's search box, or try clicking this link to the group.



GSD Net on-line support group
GSD Net is a FREE email mailing list system which enables communication between patients with any type of glycogen storage disease. It tends not to be as active as the Facebook group, but there are Type III patients registered from all around the world. It is a great way to ask a question and find other people who have already experienced the same issue. To make a 'post' you simply send an email to the server. You can restrict the emails you receive to just those concerning GSD Type III. Instructions for joining are on this linked page..



Focus - website and message board for young people
A website for young people living with all kinds of liver disease. It is run by the Children's Liver Disease Foundation in Birmingham, but is open to young people anywhere.

Click on the "Messages and Sharing" tab on the menu bar. There is a message board, stories, events, videos and links. You need to register to use the message board. The site provides some information on several liver diseases, but not as yet on GSD III.
Go the the Focus web site.



Type III group on GSD Life
There is also a social network group of over 50 people on the forum for GSD Type III at GSD Life. Try this link.