Becoming aware of other family’s JXG stories has been one of the most crucial components in accepting my baby’s condition. When we just rec...

For me, one of the most challenging aspects of Cutaneous JXG is dealing with the feeling of powerlessness over this condition. Once the bio...

This picture was taken the day that Santiago rolled over for the first time. My husband and I were waiting for this to happen for a while, ...

“Alone we are rare. Together we are strong" was the slogan for Rare Disease Day 2010 and this blog just proves it right. About a month...