As parents of children with CDG, we can support each other by sharing our experiences, both with the medical system in the UK and simply in caring for our children as best we can.
Here are some resources we have compiled thanks to our community of families:
- Hospital visits: what to take
- Organising your medical notes
- Recommended products and services
- Selecting a school
The Portuguese Association for CDG have created this guide, which you may find useful: