The international GSD community is very well served by GSD Net. It is a FREE email mailing list system which enables communication between people with all types of glycogen storage disease. There are about 500 people registered from all around the world, including some professionals. It is a great way to ask a question and find other people who have already experienced the same issue. Or just share what you are going through.
To make a 'post' you simply send an email to the server and it is sent out to everyone on the list. And of course you receive what everyone else posts. If you wish, you can restrict the emails you receive to just those concerning your own GSD type.
To start the sign up process click here. This will automatically create an outgoing email for you, then:
In due course you will receive an email response from the server with instructions on what to do next.
Once registered, you can restrict your received messages to just the GSD Type you are interested in.
Click on this link for the GSD Net web site, and log in - your details should be in your confirmation email.
• Click on "Subscriber's Corner" on the menu bar near the top of the page
• In the list of List names (you will only have), beside GSDNET click on "Settings"
• You should now be on page which is titled "Subscribe or Unsubsrcibe to the GSN Net list".
• Scroll down to the "Topics" section and in there...
• Uncheck all the Type numbers other than the one/s you want.
• You should keep Admin checked but the rest you can uncheck if you wish.
• If you uncheck "Other" you will not see any posts which have not been correctly labelled with one of the topics, so you might miss an occasional one which you would be interested in.
• Finally, click on the button at the bottom "Update Options".
There is now a GSD Net group on the social networking site Facebook. It is called the 'GSDNet Colour Supplement" as it enables photos and videos to be uploaded not just the plain text of the mailing list system. Type "GSDNet" in Facebook's search box, or try this link. Type 3 (Cori) and Type 5 (McArdle) have their own groups on Facebook, see the Type pages for details. Groups may also be started for other Types.
Association for Glycogen Storage Disease (UK) LimitedRegistered Charity No 1132271