Congenital disorder of glycosylation, type ib
How do I start a support group for congenital disorder of glycosylation type 1B?
Starting a support group is a great idea and a great help to families and individuals experiencing the same issues and symptoms of the condition. If you are interested in starting a support group of your own, a good place to start is by speaking to the support groups and organizations already founded. They likely can provide information about people near you that are interested in creating a support group.
- Climb. National Information Centre for Metabolic Diseases.
- Genetic Disorders UK.
- The UK Strategy for Rare Diseases.
- Cerebra. Positively Different.
- PANS- UK Patient Advocates for Newborn Screening Group.
- CDG CARE (Community Alliance and Resource Exchange)
- Foundation Glycosylation (FoG) Canada
- Portuguese Association CDG and other Rare Metabolic Diseases (APCDG-DMR) Portugal
- Practical Guide to CDG. Practical Guide to CDG