We have a coordinator to offer support, an annual conference, a social media channel and information cards for your pocket.
This is a great way to ask a question and find other people who have already experienced the same issue. The group is open to anyone who is diagnosed with or has an interest in GSD7.
Remember that these people are not medical professionals, but have the condition themselves – that can be very helpful in swapping experiences. However, take care not to treat someone’s opinion as scientific fact. You can view the posts before deciding whether to join.