Contact us today. Our organization maintains a list of parents wishing to connect with one another. It features stories about our children along with pictures, organizational news, research news, medical resources and other helpful information. We do not collect dues. Doctors present information on advances in CDG research and it give families the opportunity to ask questions.
Families have time to meet one another and talk about important health and behavioral issues.
It is also true for some researchers, very often it's the first time they've met a child diagnosed with the disease. Not only are these conferences heartwarming but a fantastic way to enrich all or our lives. In 1998 our organization created a videotape with clips provided from six families. They talked about the struggle to obtain a diagnosis and what it meant to their families. We have been able to use this video to bring about awareness of this group of disorders.